Giving a Voice to Parents in Neonatology: Why Their Perspective is Essential
When a baby is born prematurely, their parents’ world is turned upside down. They find themselves in a highly specialized medical environment where every heartbeat and breath is closely monitored. But a fundamental question arises: how can we truly assess the well-being and future of these babies? Are traditional medical criteria enough to reflect what really matters to families?
In a recent video from TParents’ voices, my colleagues and I explore this very question. Our work highlights the important need to include parents’ voices in neonatal research and decision-making.
Watch the video: https://www.youtube.com/watch?v=cLe-N9dGMpk
The Limits of Traditional Medical Criteria
Doctors typically evaluate the health of premature babies based on defined medical parameters, such as cerebral palsy, hearing or vision impairments, and neurocognitive development tests. These assessments categorize children on a spectrum from “unaffected” to “severely affected.”
However, this approach has major limitations:
- It does not consider parents’ perspectives, who see their child beyond medical diagnoses.
- It focuses mainly on deficits rather than strengths and quality of life.
- It overlooks real concerns of families, such as feeding, sleep, and social interactions.
What Really Matters to Parents
Research from the Parents’ Voice Project shows that parents prioritize functional aspects of daily life far more than medical diagnoses alone. For example:
- Respiratory health : Breathing difficulties are common in premature babies, but the medical indicator for bronchopulmonary dysplasia (BPD) does not always reflect the real challenges families face after leaving the hospital.
- Feeding and sleep : These are major concerns for parents, yet they are not consistently included in clinical studies.
- Quality of life and autonomy : Instead of focusing on a medical score, parents want to know if their child will be able to play, learn, interact with others, and thrive.
Moving Towards More Family-Centered Care
Recognizing these realities, the scientific and medical communities are starting to adapt their practices. One essential shift is incorporating more quality-of-life and functional indicators into neonatal follow-ups and future research.
Some concrete steps include :
- Using clearer, more functional language to explain medical results to parents.
- Including measures of parental well-being and family adaptation in standard evaluations.
- Developing tools that address the expectations and needs of families from the very start of their child’s life.
A Collaborative Approach for Better Outcomes
For neonatal research to move in the right direction, parents’ voices must be at the center of the conversation. As I often emphasize, healthcare professionals need to strike a balance between providing medical information and offering emotional support to families.
Parents should not be mere spectators in their child’s medical journey—they should be active partners. The goal is no longer just about ensuring a premature baby survives; it’s about understanding how they can grow and thrive.
👉 Watch our video to learn more: https://www.youtube.com/watch?v=cLe-N9dGMpk