Partnering With Parents to Change Measurement and Reporting of Preterm Birth Outcomes
Parents’ Voices: Transforming Neonatal Research Through Collaboration
Premature birth is a life-altering experience for families, and the uncertainty surrounding the health outcomes of these children can be overwhelming. Projects like Parents’ Voices are making a difference by integrating parental concerns into neonatal research.
Understanding the Challenges of Following Preemie Babies
In Canada, one in ten babies is born preterm, before 37 weeks of gestation, and around 1% are born extremely preterm (before 28 weeks). Advances in medical care have significantly increased survival rates, but these children remain vulnerable to long-term health issues. Neonatal follow-up, which evaluates children’s development and health, is crucial for quickly detecting delays and intervening effectively.
Yet, a major question remains: do current research outcomes truly reflect what families care about?
Until recently, research focused on specific medical outcomes, like neurodevelopmental outcomes and impairments chosen by physicians and researchers (motor, hearing, or vision difficulties). However, parents’ concerns, such as sleep, nutrition, and their child’s overall well-being, are often overlooked. The Parents’ Voices project aims to integrate these parental concerns into research.
The Parents’ Voices Project : A Collaborative Initiative
Launched in partnership with researchers, parents, and clinicians, the Parents’ Voices project seeks to better understand families’ expectations and priorities. The goal is to redefine what is considered a “successful outcome” for preterm children, incorporating outcomes that impact the well-being of both the child and the family.
A Moving Testimony
Rebecca Pierce, a mother involved in the project, shares the emotional story of her daughter Maren, born at just 25 weeks of gestation. Despite the challenges, Rebecca emphasizes that her daughter’s progress cannot be reduced to medical diagnoses. Now 15 years old, Maren leads a rich and happy life, yet follow-up tests fail to capture what truly matters: her joy, academic achievements, and unique personality.
Redefining Success in Neonatology
The project’s findings reveal that parents and researchers often have very different definitions of what is a good outcome. Parents are more likely to see their children as less affected by impairments and stress the importance of factors like emotional well-being and the ability to participate in everyday activities. Function is more important than diagnoses.
Follow-Up Questionnaires
New measures have been proposed to evaluate quality of life, function, including parental perspectives, rather than focusing solely on medical deficits.
Transforming Research and Care
The next steps for the project involve implementing these new tools in neonatal follow-up clinics. The idea is to create a more balanced dialogue between parents and healthcare professionals and better tailor interventions to the real needs of families. This also involves training professionals to adopt a more holistic approach, focusing not only on deficits but also on the child’s potential and overall well-being.
Conclusion: Hope for the Future
The Parents’ Voices project is an inspiring example of what is possible when families and experts collaborate. It’s not just about addressing medical issues but giving parents a strong voice and recognizing the complexity and beauty of premature children’s development. Together, we can create a future where every child has the chance to thrive, and families feel supported every step of the way.
Durint a live Preemie Chats we describe this study
Video : LIVE – Preemie Chats – Parents’ Voices Project September 27 at 1 pm EDT
(duration : 51 min)
A series of exchanges between parents and healthcare professionals, hosted by Jenna Morton, a mother of three children who went through neonatal intensive care (NICU).