Parental and Medical Classification of Neurodevelopment in Children Born Preterm.

Background And Objectives: The likelihood and severity of neurodevelopmental impairment (NDI) affects critical health care decisions. NDI definitions were developed without parental perspectives. We investigated the agreement between parental vs medical classification of NDI among children born preterm.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

My child's legacy: a mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives.

Objective: Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them.

Design/methods: Mixed methods convergent analysis.

The Integration of Resource Patients in Collaborative Research: A Mixed Method Assessment of the Nesting Dolls Design.

Objectives: This is a quality assessment of a research design developed for a collaborative study on adolescents and young adults who survived a brain tumor.

Methods: A descriptive and critical mixed methods approach was used to assess the design itself, the quality and information power of the database and the integration of collaborators. Project documentation, field notes and transcripts from focus groups interviews(n = 19) were used for the evaluation, which was based on the Consolidated Criteria for Reporting Qualitative Research.

Peer support groups for families in Neonatology: Why and how to get started?

Aim: To describe the development of peer-to-peer support meetings between parents of children in neonatal intensive care unit (NICU) and veteran resource parents who had a previous NICU experience.

Methods: The study had two steps: a needs assessment and a feasibility pilot study. Parental perspectives were investigated using mixed methods.