No abstract

No abstract

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.

No abstract

Background The objective of this study was to explore Canadian emergency physicians' experiences, concerns, and perspectives during the first wave of the coronavirus disease 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. Keywords COVID-19 • Emergency medicine • Pediatric emergency medicine • Physician wellness • EthicsRésumé 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).

Background: Parents and their infants are the beneficiaries of neonatal and pediatric research, but in the past they have been excluded from most stages of research projects. As a result, many projects may fail to produce the most worthwhile information for parents and families. Lately, veteran resource parents and patients have been increasingly integrated in research initiatives. Methods: Benchmarking of neonatal and pediatric research initiatives where resource parents and/or ex neonatal patients have helped to optimize pediatric research. We review ways in which resource parents/patients can be involved in research, with examples and practical ideas of how to proceed. Results: Resource parents/patients can be collaborators in research and be integrated in many steps: prioritizing research projects, designing trials, determining the outcomes of interest, ethics review, developing and improving consent procedures, collection and interpretation of data, participation in data safety monitoring committees, publication of results, and presentation to peer groups. Some of the strategies for integration of stakeholders in clinical research are more complex, may involve risk and require more training than others. Conclusion: We suggest that groups wanting to involve parents in their research endeavors start with simpler tasks that entail less risk and develop teams of resource parents who have differing interests and abilities. Quality control of programs is essential, such as frequently giving and obtaining feedback from resource parents/patients and researchers. In the future, integration of resource parents/patients into every step of clinical research will be essential to ensure that parent and family important outcomes are examined.

The philosophy of care in neonatal intensive care units (NICU) has changed. In the past, parents had minimal visiting privileges and limited contact with their children. Then, with time, patient-centred care gave place to family-centred care and family-integrated care. Parents' participation in their infant's care during hospitalisation is now encouraged and positive impacts on the baby's health are recognised. 1,2 Despite these changes, being a parent in the NICU has unique challenges. 3,4 Parents are often mourning a "normal" pregnancy, delivery and/or baby and may experience guilt, anxiety and sadness. Furthermore, because of medical technologies needed,

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 <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.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.