Partenariat famille en néonatologie: perspective parentale et intégration des parents ressources en recherche, clinique et enseignement

 

Annie Janvier

Centre hospitalier universitaire Sainte-Justine

 

Domaine : santé de la mère, des enfants et des adolescents

Programme Chercheurs-boursiers cliniciens - Senior

Concours 2018-2019

Until recently, most sick babies would die. With medical advances, most now survive and have a good quality of life. However, many babies still die or are at risk of potentially serious sequelae. In neonatal intensive care units, it is frequent to make life-and-death decisions when babies face serious adverse outcomes. These decisions, made by parents and healthcare providers, involve emotions and values. They are among the hardest decisions in pediatrics.

Being a parent in the neonatal intensive care unit is difficult, even when a baby is progressing well. Many innovations have been attempted to improve the well-being of families and their integration in the team caring for their child. One such innovation is introducing Resource Parents, "veteran" parents who have already experienced an intensive care unit with their baby, to provide peer-to-peer support to new parents. Resource parents can also assume other roles, and participate in clinical, quality improvement, research and teaching activities.
     
I have previously demonstrated that parents and health-care workers often do not share the same values regarding the relative importance of various outcomes. Parents and families generally judge impairments and quality-of-life much less harshly, and are more resilient than providers realize. Because the parental view is essential, I have, with parents as collaborators, created "l'équipe PAF" (Partenariat Famille): a team coordinating the activities of veteran/Resource Parents who have experienced the intensive care unit with their baby (some who survived, and others who died).

My goal is to:

  1. Develop our research-intervention PAF team by: a. matching parents of new sick babies with      Resource Parents; b. integrating Veteran/Resource Parents in clinical care, research and teaching and; c. measuring the impacts of these interventions.
  2. Continue investigating which outcomes are most important for parents and families throughout Canada when a baby has received neonatal intensive care.