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Despite growing interests in patient-reported outcomes, youth and families are rarely involved in designing quality improvement measures. Few quality indicators exist for the care of children with injuries in the Emergency Department (ED) and extremity fractures are among the most common injuries in children. This study's aim was to identify both parents' and youth's perspectives about ED care in the context of a suspected long-bone fracture.Youth (10-18 years old) and their parents were surveyed prospectively during their ED visit. Participants were asked: 1) to identify their main concerns, 2) to identify quality measures that were most important to them, and 3) to evaluate the ED care they received. Descriptive analyses present participants' responses. Continuous data was analyzed using a Student t-test and categorical data using a Chi-square test.Over 15 months, 350 families met eligibility criteria and were approached to participate, of which 300 participants consented and 249 surveys were completed (71% response rate): 148 parents and 101 youth (median age: 12) completed their respective surveys. Participants placed a high importance on several themes: pain management, short length of stay, and quality interactions with ED clinicians. Youth as a group prioritized their overall wellbeing and the ED environment (e.g., waiting room comfort, signage), while parents focused on accurate diagnoses and treatments. The following items were less prioritized: that radiology be close to the ED, to see the radiograph, to have access to a wheelchair, to know the identities of clinicians on the team, and to have access to entertainment. Parents and youth within the same family often did not share the same priorities. Ninety-two percent of parents reported their child's pain was treated, while 81% and 63% of youth reported their pain was treated sufficiently and quickly, respectively.Parents and youth can identify their priorities for ED care and should be engaged in efforts to improve and report on the quality of care in the ED. Youths' and parents' perspectives are complimentary and may not align, even within families. The priorities identified in this study can help inform quality improvement initiatives and personalized patient care.

Effective shared decision-making in pediatric surgery requires clarity regarding which surgical outcomes are most important to patients and their families, and how they prefer to receive the information. Despite how essential this is for effective risk communication, little is known about the communication needs and preferences of patients and their families in elective pediatric surgery.We administered a mailed and online cross-sectional survey in English and French to 548 families before or after surgery for hernia/hydrocele repair or tonsillectomy/adenoidectomy between July 2019 and February 2021. The survey consisted of 22 questions eliciting most valued patient-reported outcomes (PROs) across 4 domains: health-related quality of life (5), functional status (5), symptoms and symptom burden (5), health behaviours and patient experience (7), as well as overall impressions (3), surgical risks (5), communication preferences (4), and demographic questions (16).The survey was completed by 368 patient families (60 preoperative, 308 postoperative, response rate 67.2%). Most respondents (72%) indicated a significant desire to be informed on all listed PROs alongside surgical complications, and highly valued all functional and quality of life outcomes (92.9%89.8%, respectively). Preoperatively, patient families preferred to receive information in the form of pamphlets and websites, whereas postoperatively they preferred direct communication.Families value functional and quality of life PROs as much as clinical outcomes, and increasingly seek more contemporary (electronic) means of risk communication than we currently offer. This data will inform the development of mobile tools for personalized communication in pediatric surgery.

This report is informed by the themes of the session Trisomy 13/18, Exploring the Changing Landscape of Interventions at NeoHeart 2020—The Fifth International Conference of the Neonatal Heart Society. The faculty reviewed the present evidence in the management of patients and the support of families in the setting of trisomy 13 and trisomy 18 with congenital heart disease. Until recently medical professionals were taught that T13 and 18 were “lethal conditions” that were “incompatible with life” for which measures to prolong life are therefore ethically questionable and likely futile. While the medical literature painted one picture, family support groups shared stories of the long-term survival of children who displayed happiness and brought joy along with challenges to families. Data generated from such care shows that surgery can, in some cases, prolong survival and increase the likelihood of time at home. The authors caution against a change from never performing heart surgery to always—we suggest that the pendulum of intervention find a balanced position where all therapies including comfort care and surgery can be reviewed. Families and clinicians should typically be supported and empowered to define the best care for their children and patients. Key concepts in communication and case vignettes are reviewed including the importance of supportive relationships and the fact that palliative care may serve as an additional layer of support for decision-making and quality of life interventions. While cardiac surgery may be beneficial in some cases, surgery should not be the primary focus of initial family education and support.

Background and objectiveNeonatal 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.MethodsParents of children aged 18 months to 7 years born Results248 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)).ConclusionsParents 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.

To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopment impairment (NDI).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 trends tests.199 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% versus 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 concerns (45%), followed by the child's future (40%) and physical health (35%).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.

Context Partnership between patients and health-care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. Objective To co-construct a tool for measuring the degree of partnership between patients and HCPs. Design The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co-construct the tool; (3) assess face and content validity from patients' and HCPs' viewpoints; and (4) assess the usability of the tool and explore its measurement performance. Results The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. Conclusions The CADICEE tool is developed in co-construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health-care settings. Patient or public contribution Patients were involved in determining the importance of constructing this questionnaire. They co-constructed it, pre-tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article.

Aim To describe how Canadian level III neonatal intensive care units (NICU) organise mortality and morbidity rounds (M&MR) and explore clinicians' perspectives. Methods This questionnaire study, including open-ended questions, examined the following domains: (1) M&MR format, (2) ethical issues and (3) limitations and perceived effectiveness. Results Sixteen out of twenty (80%) level III NICUs participated. All deaths and 64% of morbidities were discussed. M&MR occurred monthly (69%) with 3-5 patients discussed hourly (63%) and usually (75%) physician led. Wide variations of practice between centres existed for practical issues, such as administrative support and attendance. 44% of centres allowed nurses to participate. Goals reported by participants were also heterogeneous: reducing medical error (56%), educational (50%), improving communication (44%) and peer review (23%). Practical barriers were time (75%) and lack of resources/structure (25%). Four main themes were as follows: the role of M&MR, the ongoing blame culture, communication issues and the distinction between mortality and morbidity. Conclusion Goals and format of M&MR vary widely. M&MR remains physician-centric, where the blame culture still endures. Neonatal M&MR models should be adapted to the modern NICU to ensure the M&MR stays relevant. It could also benefit from lessons learned in quality improvement.

Moral distress is prevalent within the neonatal intensive care unit (NICU) and can negatively affect clinicians. Studies have evaluated the causes of moral distress and interventions to mitigate its harmful effects. However, the effects of participating in moral distress studies have not been evaluated.To evaluate the impact of participation in a longitudinal, non-intervention research project on moral distress in the NICU.Clinicians who previously participated in an 18-month longitudinal research study on moral distress at two NICUs were invited to complete a questionnaire on the impact of participation. The original study required regular completion of surveys that sought predictions of death, disability and the intensity/nature of moral distress experienced by clinicians caring for extremely preterm babies. Individual and unit-wide effects were explored. Free-text responses to open-ended questions were analyzed using inductive content analysis.A total of 249/463 (53%) eligible clinicians participated. Participation in the original 18-month study was perceived as having a positive impact by 58% of respondents. Clinicians found articulating their views therapeutic (76%) and useful in clarifying personal opinions about the babies (85%). Free-text responses revealed the research stimulated increased reflection, validated feelings and increased dialogue amongst clinicians. Respondents generally did not find participation distressing (70%). However, a small number of physicians felt the focus of discussion shifted from the baby to the clinicians. Intensity and prevalence of moral distress did not significantly change over the 18-month period.Participating in moral distress research prompted regular reflection regarding attitudes toward fragile patients, improving ethical awareness. This is useful in clarifying personal views that may influence patient care. Participation also enhanced communication around difficult clinical scenarios and improved provider satisfaction. These factors are insufficient to significantly reduce moral distress in isolation.

The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families through their journey before and during neonatal intensive care disregards this individuality. This article reviews general concepts and practices that can be learned and applied by clinicians to promote resiliency and help parents cope adaptively. This review will describe how to personalize parenting support during the antenatal consultation and hospitalization for parents of extremely premature infants. To facilitate this, mindsets and care delivery models need to shift from inflexible standardized protocols to flexible guidelines that enable personalized communications, support structures and care delivery models tailored to each person's characteristics, preferences, and values.

This case report shares the story of a family who sought care elsewhere after their daughter was denied cardiac surgery in their home state because she had trisomy 18. This case report recommends case-by-case assessment of cardiac surgical interventions for children with trisomy 13 or 18 as informed by review of goals, assessment of comorbidities, and literature-informed practice. Coordinated care planning and interdisciplinary communication are relevant in cardiac surgical considerations for children with these underlying genetic conditions.

In a crisis, societal needs take precedence over a patient's best interests. Triage guidelines, however, differ on whether limited resources should focus on maximizing lives or life-years. Choosing between these two approaches has implications for neonatology. Neonatal units have ventilators, some adaptable for adults. This raises the question of whether, in crisis conditions, guidelines for treating extremely premature babies should be altered to free-up ventilators. Some adults who need ventilators will have a survival rate higher than some extremely premature babies. But surviving babies will likely live longer, maximizing life-years. Empiric evidence demonstrates that these babies can derive significant survival benefits from ventilation when compared to adults. When "triaging" or choosing between patients, justice demands fair guidelines. Premature babies do not deserve special consideration; they deserve equal consideration. Solidarity is crucial but must consider needs specific to patient populations and avoid biases against people with disabilities and extremely premature babies.

To explore decisional regret of parents of extremely preterm babies and analyze neonatal, pediatric and parental factors associated with regret.Parents of infants born29 weeks' 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.248 parents (98% participation) answered and 54% reported they did not have regret. Of those who reported regret (n=113), three themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; 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 NICU. 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 head ultrasounds were less likely to report regret.Approximately half of the parents of extremely preterm infants had regrets regarding their NICU stay. Causes of regret and guilt should be addressed and minimized.

ObjectivesExtremely 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.MethodsOver 1 year, parents of children born ResultsAmong 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%).ConclusionParents 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.

Communication with parents is an essential component of neonatal care. For extremely preterm infants born at less than 25 weeks, this process is complicated by the substantial risk of mortality or major morbidity. For some babies with specific prognostic factors, the majority die. Although many of these deaths occur after admission to the intensive care unit, position statements have focused on communication during the prenatal consultation. This review takes a more comprehensive approach and covers personalized and parent-centered communication in the clinical setting during three distinct yet inter-related phases: the antenatal consultation, the neonatal intensive care hospitalization, and the dying process (when this happens). We advocate that a ‘one-size-fits-all’ communication model focused on standardizing information does not lead to partnerships. It is possible to standardize personalized approaches that recognize and adapt to parental heterogeneity. This can help clinicians and parents build effective partnerships of trust and affective support to engage in personalized decision-making. These practices begin with self-reflection on the part of the clinician and continue with practical frameworks and stepwise approaches supporting personalization and parent-centered communication.

Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a level of care that they believe is not in the patient's interests, resulting in moral distress. This article will discuss the complex nature of moral distress arising during the care of extremely preterm babies. It will describe the challenges and cognitive biases present when contemplating potential harms to the baby and recognize the possible costs to both healthcare provider and baby when moral distress arises. Both clinicians caring for extremely preterm babies and the families themselves can experience moral distress. This article argues that for clinicians, recognizing the range of possible sources of moral distress is vital in order to appropriately address moral distress. Moral distress may arise from a desire to protect the baby, but also from an impulse to protect oneself from the emotional burdens of care. Addressing moral distress requires reflection on the factual beliefs, experiences and personal values which lie behind the distress, both within oneself in and in discussion with colleagues. Moral distress indicates that a situation is ethically challenging, but it does not necessarily mean that a wrong decision has been made.

I read with interest the submission of Haward et al. (1) dealing with the pediatrical ethics issues during this Covid‐19 outbreak. I was particularly sensitive to the chapter dedicated to neonatal which highlighted very clearly the indirect consequences of this pandemic on the paediatric population. I would like to insist on the situation in the West Indies. The numbers of adult's vital distress sharply increase the need for intensive care beds. Even the great majority of pediatric intensive care units have provided equipment and staff to support the adult units (2).

A mother huddles with her newborn baby, waiting for the gravely ill child to die. The infant, diagnosed in utero with Trisomy 18 (T18), had been born nearly lifeless. Initial limited resuscitation ...

Contexte : Le curriculum de médecine de la Faculté de médecine de l’Université de Montréal connait plusieurs mutations majeures, dont l’adoption d’une nouvelle approche relationnelle dite de partenariat avec le patient et ses proches. L’approche repose sur le postulat du patient considéré comme acteur en possession d’un savoir important pour la formation des médecins. En conséquence, la présente recherche exploratoire décrit la révision des vignettes cliniques des dossiers d’apprentissage par problèmes qui parcourent tout au long du premier cycle de la formation médicale. But : Cette recherche présente le processus de révision d’une partie du curriculum du programme de premier cycle en médecine (programme MD) intégrant des patients formateurs, des étudiants en médecine à une équipe interdisciplinaire en sciences de la santé et de sciences humaines et sociales. Méthodes : Une méthode mixte a été employée mobilisant 24 répondants appartenant à cinq groupes différents (étudiants de médecine, patients, éthiciens, spécialistes des sciences sociales, professeurs de médecine). Ils ont répondu à un questionnaire comprenant des questions à réponse chiffrées et des espaces pour commentaires écrits. Les distributions des scores des cinq groupes ont été comparées à l’aide du test non-paramétrique de Mann–Whitney. Les commentaires des répondants ont fait l’objet d’une analyse qualitative thématique. Résultats : Les cinq groupes soulignent l’importance de ne pas discriminer ou stéréotyper les groupes sur la base de leur origine culturelle. Les professeurs expriment majoritairement la nécessité d’investir plusieurs heures de travail supplémentaire pour s’approprier le nouveau contenu. Les spécialistes en sciences sociales font référence à la nécessité d’une approche systémique pour la formation médicale. Les patients abordent la transmission des connaissances expérientielles et les étudiants sont peu critiques et cherchent des réponses claires, concrètes, clairement explicitées. Les résultats des analyses statistiques ne sont pas significatifs. Conclusion : La recherche a permis de mettre en évidence la valeur ajoutée de l’implication de chacun des groupes dans un processus de révision d’une partie du curriculum. La contribution des patients a démontré une valeur ajoutée particulière en proposant une vision et une sensibilisation à la complexité des situations cliniques et au vécu expérientiel de la maladie et de la vie avec la maladie.

Background: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. Aim: (1) To investigate parental experiences with clinicians and (2) to provide practical recommendations and behaviors clinicians could emulate to avoid conflict. Design: Participants were asked to describe their best and worse experiences, as well as supportive clinicians they met. The results were analyzed using mixed methods. Setting/participants: Parents of children with trisomy 13 and 18 who were part of online social support networks. A total of 503 invitations were sent, and 332 parents completed the questionnaire about 272 children. Results: The majority of parents (72%) had met a supportive clinician. When describing clinicians who changed their lives, the overarching theme, present in 88% of answers, was trust. Parents trusted clinicians when they felt he or she cared and valued their child, their family, and made them feel like good parents (69%), had appropriate knowledge (66%), and supported them and gave them realistic hope (42%). Many (42%) parents did not want to make—or be part of—life-and-death decisions. Parents gave specific examples of supportive behaviors that can be adopted by clinicians. Parents also described adverse experiences, generally leading to conflicts and lack of trust. Conclusion: Realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible. Adversarial interactions that lead to distrust and conflicts can be avoided. Many supportive behaviors that inspire trust can be emulated.

Background Children born very preterm are at increased risk of neurodevelopmental impairment (NDI). NDI rates are used to make critical healthcare decisions. The Canadian Neonatal Follow-Up Network (CNFUN) defines severe NDI at age 18–24 months as Bayley-III Cognitive, Motor or Language composite scores Objectives To evaluate stakeholder perspective of severity of disability and ranking of different health conditions all defined as severe by CNFUN using clinical vignettes. Design/Methods Ten clinical vignettes describing 18 month old children with combinations of single and multiple impairments based on the CNFUN definition of severe NDI and one clinical vignette describing a child without NDI (control) were co-developed by clinicians and parents. The survey of 11 vignettes was distributed to: (1) British Columbian parents of very preterm children during follow-up clinic visits; and (2) Canadian and international parents, families, individuals with lived experience with prematurity and/or NDI and their social networks using a snowball sampling technique. Participants rated the severity of each vignette on a scale from 0 (worst possible health) to 10 (best possible health) and answered if they perceived the vignette to represent a severe disability. Results were analyzed descriptively and mean differences from the control were compared using a linear mixed effects model. Results 827 participants and 4553 vignettes were completed with no significant difference by population sampled. Participants classified the clinical vignettes as describing a severe condition ranging from 5% for the cognitive delay vignette to 55% for the cerebral palsy and language delay vignette. Mean difference in rank compared to control is shown in Figure 1. Only the ranking of the latter vignette was significantly different from the control. Conclusion Most key stakeholders do not perceive clinical vignettes describing CNFUN definitions of severe NDI as truly severe. Components of severe NDI rank differently but only the cerebral palsy and language delay vignette varies significantly. Current CNFUN definitions of severe NDI need to be revised.

Aim This study assessed the self-reported health perception and use of healthcare 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 2011-2016 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% versus 81%) and eliminating specific adverse symptoms (52% versus 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.

Rapid whole genome sequencing (WGS) and whole exome sequencing (WES), sometimes referred to as "next generation sequencing" (NGS) are now recommended by some experts as a first-line diagnostic test to diagnose infants with suspected monogenic conditions. Estimates of how often NGS leads to diagnoses or changes in management vary widely depending on the population being studied and the indications for testing. Finding a genetic variant that is classified as pathogenic may not necessarily equate with being able to predict the resultant phenotype or to give a reliable prognosis. Molecular diagnoses do not usually lead to changes in clinical management but they often end a family's diagnostic Odyssey and allow informed decisions about future reproductive choices. The likelihood that NGS will be beneficial for patients and families in the NICU remains uncertain. The goal of this paper is to highlight the implications of these ambiguities in interpreting the results of NGS. To do that, we will first review the types of cases that are admitted to NICUs and show why, at least in theory, NGS is unlikely to be useful for most NICU patients and families and may even be harmful for some, although it can help families in some cases. We then present a number of real cases in which NGS results were obtained and show that they often lead to unforeseen and unpredictable consequences. Finally, we will suggest ways to communicate with families about NGS testing and results in order to help them understand the meaning of NGS results and the uncertainty that surrounds them.

The study aimed to explore experiences of extremely preterm infant loss in the delivery room and perspectives about antenatal consultation. Bereaved participants were interviewed, following a semi-structured protocol. Personal narratives were analyzed with a mixed-methods approach. In total, 13 participants, reflecting on 17 pregnancies, shared positive, healing and negative, harmful interactions with clinicians and institutions: feeling cared for or abandoned, doubted or believed, being treated rigidly or flexibly, and feeling that infant's life was valued or not. Participants stressed their need for personalized information, individualized approaches, and affective support. Their decision processes varied; some wanted different things for themselves than what they recommended for others. These interactions shaped their immediate experiences, long-term well-being, healing, and regrets. All had successful subsequent pregnancies; few returned to institutions where they felt poorly treated. Antenatal consultations can be strengthened by personalizing them, within a strong caregiver relationship and supportive institutional practices.· Personalized antenatal consultations should strive to balance cognitive and affective needs.. · Including perspectives from bereaved parents can strengthen antenatal consultations.. · Trusting provider-parent partnerships are pivotal for risk communication..

BACKGROUND AND OBJECTIVES To longitudinally examine the nature of moral distress (MoD) experienced by clinicians caring for extremely low gestational age neonates. METHODS Neonatologists, medical trainees, and nurses were surveyed at regular intervals on their experience of MoD and their preferred level of care in relation to 99 neonates born RESULTS Over 18 months, 4593 of 5332 surveys (86% response rate) were collected. MoD was reported on 687 (15%) survey occasions; 91% of neonates elicited MoD during their hospitalization. In their open-ended answers, clinicians invoked 5 main themes to explain their distress: (1) infant-centered reasons (83%), including illness severity, predicted outcomes, and disproportionate care; (2) management plans (26%); (3) family-centered reasons (19%); (4) parental decision-making (16%); and (5) provider-centered reasons (15%). MoD was strongly associated with the perception of “parents wanting too much.” Neonatologists experienced less distress and were more likely than nurses and trainees to align preferred levels of care with family wishes. CONCLUSIONS The majority of preterm infants will generate some MoD; however, it is rarely shared and of a sustained nature. The main constraint reported by clinicians was “parents wanting too much,” leading to disproportionate care.

Background Preterm birth is associated with higher risk of death and severe neurodevelopmental impairment. There is an increased risk in extremely preterm infants, raising questions among ethicists and clinicians as to whether providing active care to infants born at the lower extreme is worth the outcomes, and if these outcomes are a source of decisional regrets for parents. Objectives Explore decisional regrets in parents of extremely preterm children. Design/Methods We consecutively recruited all parents of infants born Results Responses were obtained from 249 parents (98% participation rate). The following main themes emerged: (1) Nothing – I did what I could or was told to do: 53%; (2) Regrets about self-care: 31%; “I would listen to the nurses’ advice to sleep more” (3) Guilt related to the impression preterm labor could have been prevented by them or the medical team: 19%; “I would have pushed for better care and monitoring during pregnancy. I felt as though I wasn’t listened to when I thought I was in labour when sure enough I was” (4) Regrets about parental role in decision-making: 15%; “I would speak up more at the beginning of the hospitalisation”. None of the parents reported on regretting any life-and-death decisions they made at birth and in the neonatal unit. Conclusion In our cohort, more than half of parents of surviving preterm infants did not have any regrets associated to their NICU experience. However, lessons can be learned to improve parental support, self-care and solutions to improve their role as parents. Unlike what can be stated using “opinion-based medicine”, limiting or forgoing intensive care is not a solution to eliminate decisional regrets in parents.

Parenting in the NICU is an intense journey. Parents struggle to build intimacy with their child amid complex emotions and medical uncertainties. They need to rapidly adapt their vision of parenthood to the realities of intensive care. The psychological impact of this journey can have important effects on their psychological health. For parents of sick older children, “good parent” beliefs have been shown to foster positive growth. This concept is also essential for parents of infants in the NICU, although their path is complex.We write as clinicians who were also families in the NICU. We suggest parents need to hear and internalize 3 important messages that overlap but are each important: you are a parent, you are not a bad parent, and you are a good parent. We offer practical suggestions to NICU clinicians that we believe will help NICU parents cope while their infant is in the NICU and afterward.

Objectives To describe the perspective of parents who participated in peer-to-peer support meetings between parents of children in Neonatal Intensive Care Unit (NICU) and veteran resource parents with a 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 45 NICU-parents participated during a 10-week study period. They were longitudinally followed after attending at least one of 10 meetings offered; 95% (43/45) of parents answered the meeting was useful to them and gave an overall evaluation of 8.7/10 (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 described three 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 had also been through a loss, sadness and grief, NICU-parents trusted it was possible to adapt and thrive. The meetings normalized parental emotions (92%), decreased negative emotions (anger, sadness, guilt), empowered them in their parental role and helped parents communicate with loved ones and providers. Conclusion Peer-support meetings provide a unique and useful means to support parents. Future investigations will investigate if and how this type of intervention can improve clinical outcomes.

Aim To explore paediatric trainees' experiences and perspectives regarding interactions and relationships between physicians and patients' parents. Methods Email survey was sent to AAP Section of Pediatric Trainees members. Trainees were asked about 40 interactions with parents as well as perceived benefits/risks and potential influences. Analysis of associations between variables and perspectives/experiences used chi-square and Fisher exact. Results Three hundred and seventy surveys were completed. Respondents participated in a median of nine interactions (IQR 7-13; range 0-37): 99.7% participated in at least one; 52% in 5-10; 41% in >10. 50% reported refusing to participate in at least one interaction following parental request; 8% refused 5-10; 1% refused >10. Electronic communication/social media domain had highest refusals and most interactions respondents believed should never be allowed. 94% agreed that interactions may be beneficial to providers: 75% identified at least one benefit; 86% one risk. Respondents who are parents or female reported increased interactions. Conclusion A variety of interactions with patient's parents are common amongst paediatric trainees, who identify risks and benefits. Disagreements relative to acceptability of certain interactions points to the need for additional research. A reflective educational approach, rather than a prescriptive one, may help trainees better manage these relationships.

Parents' understanding/expectations regarding genetic testing for children with developmental disorders were explored. Within a month of testing, interviews were conducted with 57 parents. Many (74%) could not recall the nature of testing. Parents expected genetic testing to have positive impacts for the child (93%) and the family (98%), mainly to find the etiology and/or an intervention. Many parents (40%) reported not knowing their child's clinical diagnosis. They expected genetic testing would establish the diagnosis. Parents anticipated potential negative impacts of testing for children (78%) and families (87%), mainly finding another illness or not finding potential interventions. Abnormal results explaining the disorder were found in 9% of children. In summary, genetic results for developmental disorders are unlikely to meet parental expectations.

OBJECTIVES: To assess paediatricians’ use of genetic testing for children with global developmental delay (GDD). STUDY DESIGN: We developed and piloted a questionnaire assessing the use of genetic tests in children with GDD and awareness of relevant guidelines. All practicing Quebec paediatricians were contacted. Paediatricians who did not evaluate children with GDD in their practice were excluded. Descriptive and statistical analyses were performed with SPSS. RESULTS: Of the 651 paediatricians, 225 answered (34.5%) and 141 were eligible. Only 31.9% were familiar with at least one guideline about genetic tests for the investigation of children with GDD, but 93.6% had ordered genetic testing for children with GDD (Fragile X testing [92.9%], karyotype [87.2%] and chromosomal microarray [63.8%]). Based on vignettes, 20.6% of participants would order genetic tests for isolated GDD and 95.0% for GDD with dysmorphic features and microcephaly. Only 56.7% ordered Fragile X testing for a girl with GDD and a known family history of Fragile X syndrome. Use of tests for isolated GDD was increased in presence of maternal pregnancy, compared with absence of pregnancy (44.7% and 27.7%, respectively). More participants would order genetic tests for a child with GDD and fetal exposure to alcohol (69.5%) than isolated GDD (20.6%). CONCLUSIONS: Even though paediatricians often order genetic testing for children with GDD, practices and knowledge regarding testing are not optimal. As new and more complex genetic tests are developed, up-to-date training about the use of genetic tests for children with GDD needs to be integrated into paediatrics residency programs and continuous medical education.