Beyond Diagnoses: video summarizing the voice of parents project
In this video, I present the Voice of Parents project with Rebecca Pearce, a great parent partner.
Vidéo : LIVE – Parent Voices Project on November 8 at 1 pm EST
(duration : 1 hour)
Parental Perspectives Matter
Being parent in the NICU is difficult, surrounded by machines and statistics used by doctors to prepare you for the future. You hear about cerebral palsy, developmental delays, and “chances of survival,” but rarely about how your baby will breathe, eat, or sleep once you will be home. Yet, these questions are important.
This is where parental perspectives become essential. Physicians often measure the success of interventions using statistics and outcomes that do not reflect what parents find important. For instance, “bronchopulmonary dysplasia” (BPD) rates are frequently cited as benchmarks of pulmonary outcomes in the NICU, but what truly matters to parents are things like recurrent infections, hospital readmissions, or the impact of pulmonary disease on feeding, sleeping and activities of everyday life.
Integrating Parent Voices
This is why initiatives like the Parent Voices Project are important. This project aimed to describe what is important to parents and families. The outcomes important to families are family function, child’s function, quality of life, family relationships, and the child’s ability to participate in everyday activities.
In the video, we summarize the results of the Parents’ Voice Project. Medical classification of outcomes and levels of disability do not correspond to the family’s experience. It is essential to talk to parents about what diagnoses mean in everyday life and speak to families about functionality, resilience, and positive transformation. Additionally, we must offer practical support, hope, and practical information to help families navigate the hospitalization.
What can clinicians and researchers do
This change doesn’t happen overnight, but every step counts. As doctors and researchers, it is our responsibility to co-create solutions that include these parental voices. Together, by actively involving families in our discussions and decisions, we can provide neonatal care that focuses not just on survival but on a life full of potential.
I have personally experienced prematurity as a parent, and I speak about it in the talk, this translates in a commitment to improving care in neonatology. Discover my book : https://dranniejanvier.com/en/breathe-baby-breathe-book/