A5033243386- Neonatal Respiratory Health Research
- Infant Development and Preterm Care
- Ethics and Legal Issues in Pediatric Healthcare
- Childhood Cancer Survivors' Quality of Life
- Palliative Care and End-of-Life Issues
- Family and Patient Care in Intensive Care Units
- Ethics in medical practice
- Family and Disability Support Research
- Child and Adolescent Health
- Congenital Diaphragmatic Hernia Studies
- Neonatal and fetal brain pathology
- Prenatal Screening and Diagnostics
- Neuroscience of respiration and sleep
- Infant Nutrition and Health
- Grief, Bereavement, and Mental Health
- Infant Health and Development
- Emergency and Acute Care Studies
- Assisted Reproductive Technology and Twin Pregnancy
- Patient Dignity and Privacy
- Congenital Anomalies and Fetal Surgery
- Patient-Provider Communication in Healthcare
- Genomics and Rare Diseases
- Urological Disorders and Treatments
- Congenital Heart Disease Studies
- Pediatric Pain Management Techniques
Centre Hospitalier Universitaire Sainte-Justine
2016-2025
Université de Montréal
2015-2024
Centre National des Soins Palliatifs et de la Fin de Vie
2020-2023
Pediatrics and Genetics
2020
Research Network (United States)
2020
Centre de recherche Versailles Saint-Quentin Institutions Publiques
2020
Université Laval
2020
Directorate-General Joint Research Centre
2020
Clinique Saint-Joseph
2020
Hôpital Maison Blanche
2018
BACKGROUND: Children with trisomy 13 and 18 (T13-18) have low survival rates survivors significant disabilities. For these reasons, interventions are generally not recommended by providers. After a diagnosis, parents may turn to support groups for additional information. METHODS: We surveyed of children T13-18 who belong describe their experiences perspectives. RESULTS: A total 503 invitations participate were sent 332 questionnaires completed (87% response rate based on site visits, 67%...
Trisomy 13 and trisomy 18 (T13‐18) are associated with high rates of perinatal death severe disability among survivors. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some choose continue pregnancy. We sent 503 invitations answer a questionnaire parents who belong T13 internet support groups. Using mixed methods, we asked about prenatal experience, hopes, the life affected child, family experience. 332 answered questions 272 children; 128 experienced PND. These...
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length life their child factors associated with survival. Parents children who lived trisomy or that were part English-speaking social networks invited participate in questionnaire study. Participants answered questions about hopes/goals, decisions regarding neonatal interventions, duration children's lives....
To quantify moral distress in neonatal ICU and PICU clinicians to identify associated factors.A national cross-sectional survey of working an or PICU. Moral was assessed with the Distress Scale-Revised by self-rating. Depersonalization on subscale Maslach Burnout Inventory. Respondents reported their attendance at each six hospital supports that may serve mitigate frontline staff. Analyses compared outcomes across respondent characteristics hierarchical linear regression evaluated...
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 vs medical classification among children born preterm. In this multicenter study, parents preterm (<29 weeks) evaluated at 18 to 21 months corrected age (CA) asked whether they considered their child as developing normally, having mild/moderate impairment, or severe impairment. Medical...
Legal and ethical standards require resuscitation when it is considered to be in the patient's best interest. We hypothesized that newborn infants might dealt with according different standards, compared older patients.An anonymous questionnaire describing 8 currently incompetent patients potential neurologic sequelae who required was administered groups of physicians students. Survival morbidity rates were explicitly described; a very preterm infant, full term infant 2-month-old had...
<h3>Background</h3> The natural history of all known patients with French-Canadian Leigh disease (Saguenay-Lac-St-Jean cytochrome <i>c</i> oxidase deficiency, MIM220111, SLSJ-COX), the largest cohort a genetically homogeneous, nuclear encoded congenital lactic acidosis, was studied. <h3>Results</h3> 55 56 were homozygous for A354V mutation in <i>LRPPRC</i>. One genetic compound (A354V/C1277Xdel8). Clinical features included developmental delay, failure to thrive, characteristic facial...
When physicians are asked for a consult women in premature labour, they face complex set of challenges. Policy statements recommend that be given detailed information about the risks various outcomes, including death, long-term disability and specific neonatal problems. Both personal narratives studies suggest parents also base their decisions on factors other than probabilistic facts expected outcomes. Statistics difficult to understand at any time. Rational decision-making may when taking...
For parents, the experience of having an infant in NICU is often psychologically traumatic. No parent can be fully prepared for extreme stress and range emotions caring a critically ill newborn. As health care providers familiar with NICU, we thought that understood impact on parents. But were not to see children our own families as patients. Here are some lessons has taught us. We offer these hope helping professionals consider balanced view NICU's families.
Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care.To explore clinical experiences, perspectives perceptions in neonatology.An anonymous questionnaire was distributed medical nursing providers within two tertiary level neonatal intensive care units (NICUs)-one surgical one perinatal-seeking their understanding the term experience it. Open-ended questions were analysed using qualitative...
Parenting in the NICU is an intense journey. Parents struggle to build intimacy with their child amid complex emotions and medical uncertainties. They need rapidly adapt vision of parenthood realities intensive care. The psychological impact this journey can have important effects on health. For parents sick older children, "good parent" beliefs been shown foster positive growth. This concept also essential for infants NICU, although path complex.We write as clinicians who were families...