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.

Prioritizing Solutions and Improving Resources among Young Pediatric Brain Tumor Survivors: Results of an Online Survey.

Pediatric Brain Tumor Survivors (PBTS) often experience social, academic and employment difficulties during aftercare. Despite their needs, they often do not use the services available to them. Following a previous qualitative study, we formulated solutions to help support PBTS return to daily activities after treatment completion. The present study aims to confirm and prioritize these solutions with a larger sample. We used a mixed-methods survey with 68 participants (43 survivors, 25 parents, PBTS' age: 15-39 years). Firstly, we collected information about health condition, and school/work experience in aftercare. Then, we asked participants to prioritize the previously identified solutions using Likert scales and open-ended questions. We used descriptive and inferential statistics to analyze data, and qualitative information to support participants' responses. Participants prioritized the need for evaluation, counseling, and follow-up by health professionals to better understand their post-treatment needs, obtain help to access adapted services, and receive information about resources at school/work. Responses to open-ended questions highlighted major challenges regarding the implementation of professionals' recommendations at school/work and the need for timely interventions. These results will help refine solutions for PBTS and provide key elements for future implementation. Translating these priorities into action will need further work involving professionals and decision makers.

Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders.

Children born very preterm are at risk of severe neurodevelopmental impairment, a composite endpoint that includes cerebral palsy, developmental delay, and hearing and visual impairment defined by medical professionals. We aimed to describe preterm birth stakeholders' perspectives on this classification. Ten clinical scenarios describing 18-month-old children with different components of severe neurodevelopmental impairment and one scenario of a typically developing child (control) were distributed to parents and stakeholders using a snowball sampling technique. For each scenario, participants rated health on a scale from 0 to 10 and whether the scenario represented a severe condition. Results were analyzed descriptively and mean differences from the control scenario were compared using a linear mixed-effects model. Stakeholders (number = 827) completed 4553 scenarios. Median health scores for each scenario varied from 6 to 10. The rating for the cerebral palsy and language delay scenario was significantly lower (mean difference -4.3; 95% confidence interval: -4.4, -4.1) than the control. The proportion of respondents rating a scenario as "severe" ranged from 5% for cognitive delay to 55% for cerebral palsy and language delay. Most participants disagreed with the rating used in research to describe severe neurodevelopmental impairment in preterm children. The term should be redefined to align with stakeholder perceptions.

Gratitude, fragility and strength: Perspectives of adults born preterm about prematurity.

AIM: The aim of the study was to explore how young adults thought that being born preterm had affected their lives. METHODS: Adult participants of a research cohort were questioned about their perspectives. Answers were analysed using mixed methods. RESULTS: Forty-five participants evaluated their health at median score of 8/10. When asked about the meaning of being born preterm, 65% had positive self-centred answers, invoking two main themes: being stronger/'a fighter'/more resilient and being a survivor/chosen; 42% also reported negative themes, such as having health problems and a difficult start. All heard about their prematurity from their parents, 55% with positive child-centred or healthcare system-centred themes, 19% with neutral themes; 35% also heard negative parent-centred themes (tragic experience, guilt, mother's health). When asked which words were associated with prematurity, participants mainly chose positive words for themselves and their family, but more negative words for how the media and society depicted prematurity. Answers were not correlated with adverse objective health measures. CONCLUSION: Participants evaluated their health in a balanced fashion. Preterm-born adults often feel that they have experienced positive transformations as a result of their traumatic start. They often have feelings of gratitude and strength, independent of health problems.

Fragility and resilience: parental and family perspectives on the impacts of extreme prematurity.

OBJECTIVES: Extremely preterm babies have a significant risk of neurodevelopmental impairment (NDI). There has been little investigation regarding the impact of prematurity on families. The objective of this study was to explore parental perspectives regarding the impact of prematurity on themselves/their family. METHODS: Over 1 year, parents of children born <29 weeks' gestational age (GA) who were between 18 months old and 7 years old and came for their follow-up visit were invited to participate. They were asked to categorise the impacts of prematurity on their life and their family as positive, negative or both and to describe those impacts in their own words. Thematic analysis was performed by a multidisciplinary group, including parents. Logistic regression was performed to compare parental responses. RESULTS: Among parents (n=248, 98% participation rate), most (74%) reported that their child's prematurity had both positive and negative impacts on their life or their family's life, while 18% reported only positive impacts and 8% only negative impacts. These proportions were not correlated with GA, brain injury, nor level of NDI. The positive impacts reported included: an improved outlook on life, such as gratitude and perspective (48%), stronger family relationships (31%) and the gift of the child (28%). The negative themes were stress and fear (42%), loss of equilibrium due to medical fragility (35%) and concerns about developmental outcomes including the child's future (18%). CONCLUSION: Parents report both positive and negative impacts after an extremely preterm birth, independent of disability. These balanced perspectives should be included in neonatal research, clinical care and provider education.

Pulmonary important outcomes after extremely preterm birth: Parental perspectives.

AIM: To describe pulmonary important outcomes (PIO) reported by parents of children born extremely preterm. METHODS: Over 1-year, all parents of children aged 18 months-7-years born <29 weeks' GA were asked regarding their perspectives. The proportion of parents who described PIO and the themes they invoked were examined. Results were analysed using mixed methods. RESULTS: Among parental responses (n = 285, 98% participation rate), 44% spoke about PIO, invoking 24 themes pertaining to NICU hospitalisation and/or long-term respiratory health. Some themes had an impact primarily on the child (e.g. exercise limitation), while the majority had an impact on the whole family (e.g. hospital readmissions). None mentioned oxygen at 36 weeks nor bronchopulmonary dysplasia (BPD). The proportion of responses invoking PIO were statistically similar between parents of children with and without BPD, born before or after 25 weeks or with birthweight < or ≥750 g. PIO were more likely to be mentioned in males and among those readmitted for respiratory problems. CONCLUSION: Parents describe many PIO, most related to the functional impact of lung disease on their child (and family), rather than the diagnosis of BPD itself. Most of these PIO are not primary outcomes in large neonatal trials nor collected in neonatal databases.

Indocyanine green fluorescence angiography in pediatric intestinal resections: A first prospective mixed methods clinical trial.

BACKGROUND: The aim of this study was to establish the feasibility and safety of the use of indocyanine green technology during pediatric intestinal resections. While indocyanine green fluorescence angiography (ICG-FA) has been advocated as an imaging technique to assess bowel perfusion in adults, few studies have evaluated this technology in a pediatric context. METHODS: A prospective clinical trial was conducted. Patients 16 years old or younger undergoing a surgery potentially requiring an intestinal resection were eligible. Patients received a standardized intravenous injection of indocyanine green and intestinal perfusion was evaluated. The study endpoints included safety, impact on bowel resection and feasibility and acceptance of ICG-FA in this population. RESULTS: From May 2020 to March 2021, 30 consecutive patients were included in this trial. Final analysis was done on 28 patients with a median age of 15.00 [6.36,85.00] weeks and weight of 5.58 [3.64,11.70] kg at surgery. Adequate fluorescence was achieved in less than one minute for all cases with an average dose of 0.14 mg/kg. No adverse event related to indocyanine green occurred. ICG-FA versus standard assessment of potential resection sites differed in 62% (95% IC 0.41-0.82) of our cases. Qualitative analysis demonstrated that 95% of the surgical team agreed that ICG-FA was safe. CONCLUSIONS: The use of ICG-FA is feasible and safe for pediatric intestinal resections. Introduction of ICG-FA was simple and acceptance rates were high within the surgical team. This fluorescence imaging may be a valuable imaging technology for intestinal resections in pediatric surgery.

Guilt and Regret Experienced by Parents of Children Born Extremely Preterm.

OBJECTIVES: To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret. STUDY DESIGN: Parents of infants born <29 weeks of gestational age, aged between 18 months and 7 years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: "Knowing what you know now, is there anything you would have done differently?" Mixed methods were used to analyze responses. RESULTS: In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n = 113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret. CONCLUSIONS: Approximately one-half of the parents of infants born extremely preterm had regrets regarding their neonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized.

Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad.

AIM: To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopmental impairment (NDI). METHODS: A parental survey about their children aged 15-36 months corrected age born ˂29 weeks' gestation investigated parental concerns and positive attributes. Parental responses in relation to their child's level of NDI were examined using Kruskal-Wallis and chi-square for trend tests. RESULTS: One hundred ninety-nine parental responses were obtained for 163 children, including 44% with NDI. Vast majority of parents reported their children were developing well with good physical health. All parents, irrespective of NDI, reported their children were happy and had a positive personality. Appreciation of social interactions was higher for parents of children without versus with NDI (96% vs. 87%, p = 0.039). Parents of children with NDI were more likely to express concerns than those without NDI. Overall, development was the most common area of concern (45%), followed by the child's future (40%) and physical health (35%). CONCLUSION: Parents of preterm children report many positive points and concerns, some of which are not examined in neonatal follow-up data. These parental perspectives could be used to inform parents of preterm infants, both antenatally and in the neonatal unit.

Implementation Outcomes and Challenges of Partnerships between Resource Parents and Parents with Sick Infants in Intensive Neonatal Care Units: A Scoping Review.

Parents with a sick child in a neonatal intensive care unit (NICU) usually experience stress, anxiety, and vulnerability. These precarious feelings can affect early parent-child interactions and have consequences for the child's neurodevelopment. Parents who have had a sick child in an NICU (veteran parents) can offer helpful interventions for these vulnerable families. This article is a scoping review of parental interventions used with the families of NICU infants, and an overview of French perspectives. Two independent reviewers studied the scientific literature published in English between 2001 to 2021 using Covidence software. The databases used were MEDLINE, ISI Web of Science, the Cochrane Database, and Google Scholar. Themes were identified from the articles' results using an open coding approach. The data are presented in a narrative format. Ten articles were included, and four major themes addressed: (1) description of activities, (2) recommendations, (3) impact, and (4) barriers (resulting from recruitment, training, remuneration, and organization). Activities were very diverse, and a step-by-step implementation was recommended by all authors. Peer-support interventions might be a potential resource for those anxious parents and improve their NICU experiences. These challenges are described by SOS Préma in France. This article brings together recent studies on partnership in the NICU. It is an innovative topic in neonatology with vast issues to explore.

The responsibility to care: lessons learned from emergency department workers' perspectives during the first wave of the COVID-19 pandemic in Canada.

BACKGROUND: This study's objective was to examine emergency department (ED) workers' perspectives during the Canadian COVID-19 first wave. METHODS: This qualitative study included workers from nine Canadian EDs who participated in 3 monthly video focus groups between April and July 2020 to explore (1) personal/professional experiences, (2) patient care and ED work, (3) relationships with teams, institutions and governing bodies. Framework analysis informed data collection and analysis. RESULTS: Thirty-six focus groups and 15 interviews were conducted with 53 participants (including 24 physicians, 16 nurses). Median age was 37.5 years, 51% were female, 79% had more than 5 years' experience. Three main themes emerged. (1) Early in this pandemic, participants felt a responsibility to provide care to patients and solidarity toward their ED colleagues and team, while balancing many risks with their personal protection. (2) ED teams wanted to be engaged in decision-making, based on the best available scientific knowledge. Institutional decisions and clinical guidelines needed to be adapted to the specificity of each ED environment. (3) Working during the pandemic created new sources of moral distress and fatigue, including difficult clinical practices, distance with patients and families, frequent changes in information and added sources of fatigue. Although participants quickly adapted to a "new normal", they were concerned about long-term burnout. Participants who experienced high numbers of patient deaths felt especially unprepared. INTERPRETATION: ED workers believe they have a responsibility to provide care through a pandemic. Trust in leadership is supported by managers who are present and responsive, transparent in their communication, and involve ED staff in the development and practice of policies and procedures. Such practices will help protect from burnout and ensure the workforce's long-term sustainability.

RéSUMé: CONTEXTE: Cette étude avait pour objectif d'examiner le point de vue des travailleurs des services d'urgence pendant la première vague de la COVID-19 au Canada. MéTHODES: Cette étude qualitative a inclus des travailleurs de neuf services d'urgence canadiens qui ont participé à 3 groupes de discussion monsuels par visioconférence entre avril et juillet 2020, pour explorer: (1) leurs expériences personnelles/professionnelles, (2) les soins aux patients et le travail au service d'urgence, (3) leurs relations avec les équipes, les institutions et instances dirigeantes. Le "framework analysis" a guidé le receuil et l'analyse des données. RéSULTATS: Trente-six groupes de discussion et 15 entretiens individuels ont été menés avec 53 participants (dont 24 médecins et 16 infirmières). L'âge médian était de 37,5 ans, 51% étaient des femmes, 79% avaient plus de 5 ans d'expérience. Trois thèmes principaux sont ressortis. (1) Au début de cette pandémie, les participants se sont sentis responsables de prodiguer des soins aux patients et solidaires envers leurs collègues et leurs équipes des urgences, tout en cherchant à équilibrer la gestion de nombreux risques et leur protection personnelle. (2) Les équipes des services d'urgence souhaitaient participer aux prises de décision, informées par les meilleures connaissances scientifiques disponibles. Les décisions institutionnelles et les lignes directrices cliniques doivent être adaptées à la spécificité de chaque salle d'urgence. (3) Travailler pendant la pandémie a créé de nouvelles sources de détresse morale et de fatigue, notamment des pratiques cliniques difficiles, la distance avec les patients et les familles, les changements fréquents d'information. Bien que les participants se soient rapidement adaptés à une « nouvelle normalité¼, ils étaient préoccupés par l'épuisement professionnel des travailleurs au long terme. Les participants qui ont vécu un nombre élevé de décès de patients à l'urgence se sentaient particulièrement mal préparés. INTERPRéTATION: Les travailleurs des services d'urgence estiment qu'ils ont la responsabilité de fournir des soins en cas de pandémie. Un sentiment de confiance dans les décideurs peut être soutenu par des gestionnaires qui sont présents et réactifs, transparents dans leur communication, et qui impliquent le personnel des services d'urgence dans le développement des politiques et procédures cliniques. De telles pratiques aideront à protéger contre l'épuisement professionnel pour garantir le bien-être des travailleurs d'urgence.

Residents as Research Subjects: Balancing Resident Education and Contribution to Advancing Educational Innovations.

Background: Research in education advances knowledge and improves learning, but the literature does not define how to protect residents' rights as subjects in studies or how to limit the impact of their participation on their clinical training. Objective: We aimed to develop a consensual framework on how to include residents as participants in education research, with the dual goal of protecting their rights and promoting their contributions to research. Methods: A nominal group technique approach was used to structure 3 iterative meetings held with the pre-existing residency training program committee and 7 invited experts between September 2018 and April 2019. Thematic text analysis was conducted to prepare a final report, including recommendations. Results: Five themes, each with recommendations, were identified: (1) Freedom of participation: participation, non-participation, or withdrawal from a study should not interfere with teacher-learner relationship (recommendation: improve recruitment and consent forms); (2) Avoidance of over-solicitation (recommendation: limit the number of ongoing studies); (3) Management of time dedicated to participation in research (recommendations: schedule and proportion of time for study participation); (4) Emotional safety (recommendation: requirement for debriefing and confidential counseling); and (5) Educational safety: data collected during a study should not influence clinical assessment of the resident (recommendation: principal investigator should not be involved in the evaluation process of learners in clinical rotation). Conclusions: Our nominal group technique approach resulted in raising 5 specific issues about freedom of participation of residents in research in medical education, over-solicitation, time dedicated to research, emotional safety, and educational safety.

Parental sense of competence, paternal stress and perceived construction of the relationship with the premature newborn: A mixed method study.

OBJECTIVE: The aim of this study is to investigate the parental sense of competence, the paternal stress and the perceived construction of the relationship with the infant of during the hospitalization in a neonatal intensive care unit. METHODS: Forty-eight French fathers of premature infants participated in this study, which took place in the Toulouse University Hospital in France. Mixed methods are used, a semi-structured interview and two self-reported questionnaires. RESULTS: Main results show that fathers perceive the construction of the first relationship with their infant through the skin-to-skin and eye contact, along with their immediate presence by their child. The physical contact, although it may induce more stress, it motivates the father to be more involved in the caregiving process. Child's fragile appearance generates more stress to fathers. Finally, the stress linked to the construction of their relationship with the infant will affect their parental sense of competence. CONCLUSION: Results are discussed with respect to recent literature and ways to improve professional practice are proposed.

A Portrait of Self-Reported Health and Distress in Parents Whose Child Died of Cancer.

Grieving a child following cancer is a substantially difficult task. The objectives of this research were: 1) to describe current quality of life (QoL), psychological distress and symptoms of grief of bereaved parents, and 2) to explore the role of possible contributors of QoL and psychological distress. Forty-six parents (32 mothers) of children who died of cancer were surveyed on their QoL, distress, and complicated grief. Data were analyzed using multiple linear regression. Parents had a high frequency of grieving symptoms (58%). Mothers reported more retrospective grief symptoms than fathers when describing the year after child death. Current lower mental well-being was associated with experiencing higher retrospective grief symptoms, a shorter period since child death, and being a father. Hence, parents experienced disturbances even long after child death. Mothers and fathers may present specificities that should be considered when developing supportive activities for this vulnerable population.

Community, Hope, and Resilience: Parental Perspectives on Peer Support in Neonatology.

OBJECTIVES: To describe the perspective of parents who participated in peer-to-peer support meetings with parents of children in a neonatal intensive care unit (NICU) and veteran resource parents with previous NICU experience. STUDY DESIGN: During a longitudinal evaluation in a tertiary care NICU, participating parents were asked to evaluate meetings; with open-ended questions, they were asked about their perspectives. Results were analyzed using mixed methods. RESULTS: Forty-five NICU parents participated over a 10-week study period. They were followed longitudinally after attending at least 1 of the 10 meetings offered; 95% of parents (43 of 45) reported that the meeting was useful to them and gave an overall evaluation of 8.7 out of 10 (average). For each meeting, all the subjects on the checklist of the moderators (veteran resource parents) were discussed with new parents. When describing why and how the meetings were useful to them in their answers to open-ended questions, NICU parents reported 3 major themes: (1) decreasing isolation and being a community (73%), (2) hope and resilience (63%), and (3) getting practical "parent" information (32%). Sharing stories with parents who also had experienced loss, sadness, and grief, NICU parents trusted that it was possible to adapt and thrive. The meetings normalized parents' emotions (92%), decreased negative emotions (eg, anger, sadness, guilt), empowered them in their parental role, and helped them communicate with loved ones and providers. CONCLUSIONS: Peer support meetings are a unique and useful means to support parents. Future investigations will investigate whether and how this type of intervention can improve clinical outcomes.

Parental perspective on important health outcomes of extremely preterm infants.

BACKGROUND AND OBJECTIVE: Neonatal outcome research and clinical follow-up principally focus on neurodevelopmental impairment (NDI) after extremely preterm birth, as defined by the scientific community, without parental input. This survey aimed to investigate parental perspectives about the health and development of their preterm children. METHODS: Parents of children aged 18 months to 7 years born <29 weeks' gestational age presenting at a neonatal follow-up clinic over a 1-year period were asked to evaluate their children's health and development. They were also asked the following question: 'if you could improve two things about your child, what would they be?' Responses were analysed using mixed methods. Logistic regressions were done to compare parental responses. RESULTS: 248 parents of 213 children (mean gestational age 26.6±1.6 weeks, 20% with severe NDI) were recruited. Parents evaluated their children's health at a median of 9/10. Parental priorities for health improvements were (1) development, mainly behaviour, emotional health and language/communication (55%); (2) respiratory heath and overall medical fragility (25%); and (3) feeding/growth issues (14%). Nineteen per cent explicitly mentioned 'no improvements'. Parents were more likely to state 'no improvements' if child had no versus severe NDI OR 4.33 (95% CI 1.47 to 12.75)) or if parents had no versus at least a high school diploma (OR 4.01 (95% 1.99 to 8.10)). CONCLUSIONS: Parents evaluate the health of their preterm children as being very good, with positive perspectives. Parental concerns outside the developmental sphere should also be addressed both in clinical follow-up and research.

Articulating viewpoints to better define and respond to the needs of adolescents and young adult survivors of pediatric brain tumors.

PURPOSE: Adolescents and young adult survivors of pediatric brain tumors (AYA-PBTS) often experience difficulties with social skills, pursuit of studies and employment. This study explored pediatric long-term survivors' perspective on their post-treatment needs and ways to improve resources and interventions. METHODS: We used an original method of three sequential focus group interviews by adding the perspectives of survivors (15-22 years), parents and health professionals (total N = 22). Participants were recruited using purposive sampling from the long-term follow-up clinic at a Canadian tertiary hospital. We used computer-assisted analysis to draw themes from each group and compare thematic content across groups. RESULTS: Categorization of participants' responses resulted in three domains: personal life, education and work. Participants mentioned the improvement of communication tools to facilitate access to timely information, the organization of counseling to improve employment integration, and tailoring interventions to optimize the return to daily activities in aftercare. Subsequent inductive analysis revealed three overarching trends among groups: multipurpose social networking, AYA-PBTS-specific information websites and transition tools and procedures. CONCLUSION AND IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: This study identified solutions for AYA-PBTS' specific needs in aftercare. This population needs up-to-date post-treatment information and refined outreach procedures. Future research should define and prioritize these suggested solutions.

Health perception by young adults born very preterm.

AIM: This study assessed the self-reported health perception and use of health care by adults born very preterm before 30 weeks of gestation. METHODS: The participants were part of a cross-sectional observational study that assessed the global health of young adults aged 18-29 years born very preterm in Quebec, Canada. Health perception was explored from 2011 to 2016 using the second Short-Form 36 Health Survey (SF-36v2), and objective health measures were obtained. Further in-depth open-ended questions were asked in 2018. RESULTS: The 101 preterm subjects had similar perceptions of their health to 105 term-born controls, according to the SF-36v2, despite significantly more adverse health conditions. Their healthcare use was similar. However, the later in-depth questionnaire showed that 23% of 45 preterm subjects and 3% of 34 term-born subjects perceived their health as poorer than the general population. Major factors that could improve their respective health were lifestyle habits (74% vs. 81%) and eliminating specific adverse symptoms (52% vs. 27%). Only 10% of preterm individuals had been asked about their perinatal history by physicians. CONCLUSION: Adults born very preterm said their health was poorer than the general population and identified specific factors that should be addressed during routine health monitoring.

Elaboration and refinement of a motivational communication training program for healthcare professionals in pediatric oncology: a feasibility and acceptability study.

INTRODUCTION: A healthy lifestyle could have a positive impact in reducing the incidence of some long-term sequelae secondary to pediatric cancer treatments. Motivational communication (MC) is effective at improving healthy lifestyle habits, especially when patients experience change as a challenge. To date, there is no available intervention program using MC that promotes healthy lifestyles in pediatric oncology. OBJECTIVES: The aim of this study was to develop the first MC training program for professionals in pediatric oncology and assess its feasibility and acceptability. MATERIALS AND METHODS: Following standard procedures involving professionals, we developed a professional-targeted training named the Motivation Cafés, consisting in six sessions of core MC skills for healthcare professionals who wish to positively impact lifestyles of families in pediatric oncology. We used a mixed-methods quantitative-qualitative study to assess the program feasibility and acceptability. Professionals in nutrition and physical activity (N = 16) attended two rounds of the training and completed surveys to evaluate the training. They reported self-efficacy and knowledge in MC. Participation and retention rates were used to assess acceptability and feasibility, and a thematic analysis of the open-ended questions was performed to identify strengths and weaknesses of the program to further refine the program. We used non-parametric statistics to compare pre-post changes on measures of self-efficacy and knowledge in MC. RESULTS: Attendance and retention (average 4.2/6 sessions completed) were high, suggesting very good adherence and feasibility. We also found high levels of acceptability and pertinence of the program (i.e. >90%). The results suggested probable improvements in self-efficacy and knowledge, but these were not statistically significant given the limited sample size. CONCLUSION: The training Motivation Cafés is now ready to be pilot tested in pediatric cancer care centers.

A survey of Canadian emergency physicians' experiences and perspectives during the COVID-19 pandemic.

BACKGROUND: The objective of this study was to explore Canadian emergency physicians' experiences, concerns, and perspectives during the first wave of the coronavirus disease (COVID-19) pandemic. METHODS: This cross-sectional survey of physician members of Pediatric Emergency Research Canada and the Canadian Association of Emergency Physicians explored: personal safety/responsibility to care; patient interactions; ethical issues in pandemic care; institutional dynamics and communication practices. Data analysis was descriptive: categorical data were summarised with frequency distributions, continuous data [100 mm visual analog scales (VAS)] were analysed using measures of central tendency. Short open-ended items were coded to identify frequencies of responses. RESULTS: From June 29 to July 29, 2020, 187 respondents (13% response rate) completed the survey: 39% were from Ontario and 20% from Quebec, trained in general (50%) or pediatric (37%) emergency medicine. Respondents reported a high moral obligation to care for patients (97/100, IQR: 85-100, on 100 mm VAS). Fear of contracting COVID-19 changed how 82% of respondents reported interacting with patients, while 97% reported PPE negatively impacted patient care. Despite reporting a high proportion of negative emotions (84%), respondents (59%) were not/slightly concerned about their mental health. Top concerns included a potential second wave, Canada's financial situation, worldwide solidarity, and youth mental health. Facilitators to provide emergency care included: teamwork, leadership, clear communications strategies. CONCLUSION: Canadian emergency physicians felt a strong sense of responsibility to care, while dealing with several ethical dilemmas. Clear communication strategies, measures to ensure safety, and appropriate emergency department setups facilitate pandemic care. Emergency physicians were not concerned about their own mental health, requiring further exploration.

RéSUMé: CONTEXTE: L'objectif de cette étude était d'explorer les expériences, les préoccupations et les perspectives des médecins urgentistes canadiens pendant la première vague de la pandémie de coronavirus (COVID-19). MéTHODES: Cette enquête transversale auprès des médecins membres de Pediatric Emergency Research Canada et de l'Association canadienne des médecins d'urgence a permis d'explorer les aspects suivants : sécurité personnelle/responsabilité de soigner ; interactions avec les patients ; enjeux éthiques liés au soin en temps de pandémie ; dynamique institutionnelle et pratiques de communication. L'analyse des données était descriptive : les données catégorielles ont été résumées par des distributions de fréquence, les données continues [échelles visuelles analogiques (EVA) de 100 mm] ont été analysées à l'aide des indicateurs de tendance centrale. Les réponses ouvertes courtes ont été codées pour déterminer la fréquence des réponses. RéSULTATS: Du 29 juin au 29 juillet 2020, 187 répondants (taux de réponse de 13 %) ont répondu à l'enquête : 39 % provenaient de l'Ontario et 20 % du Québec, fet étaient formés en médecine d'urgence générale (50 %) ou pédiatrique (37 %). Les répondants ont rapporté une obligation morale élevée de s'occuper des patients (97/100, IQR : 85-100, sur une EVA de 100 mm). Quatre-vingt deux pourcent des répondants ont déclaré que la peur de contracter le COVID-19 avait modifié leurs intéractions avec les patients, tandis que, 97 % ont déclaré que l'EPI avait un impact négatif sur les soins aux patients. Bien qu'ils aient rapporté une forte proportion d'émotions négatives (84 %), les répondants (59 %) n'étaient pas/légèrement préoccupés par leur santé mentale. Parmi les principales préoccupations figuraient la possibilité d'une deuxième vague, la situation financière du Canada, la solidarité mondiale et la santé mentale des jeunes. Les facilitateurs chargés de fournir des soins d'urgence comprenaient : le travail d'équipe, le leadership et des stratégies de communication claires. CONCLUSION: Les médecins urgentistes canadiens ont ressenti un fort sentiment de responsabilité envers les soins, tout en faisant face à plusieurs dilemmes éthiques. Des stratégies de communication claires, des mesures visant à assurer la sécurité des professionnels d'urgence et une organisation appropriée des services d'urgence facilitent les soins en cas de pandémie. Les médecins urgentistes n'étaient pas préoccupés par leur propre santé mentale, ce qui mériterait une étude une étude plus approfondie.