Updated: Jul 15, 2022
By Melissa Jones
For many preemie parents like myself, the neonatal follow-up clinic is a regular part of the post-NICU experience. I became accustomed to the long appointments, the battery of tests, and the discussions afterwards of scores and aptitudes and progress. It was helpful to have the goalposts identified and next steps clarified, but I always felt that there were many wonderful parts about my son that could never quite be captured by a Bayley score.
The folks at the Canadian Neonatal Follow Up Network (CNFUN) also observed this disconnect between the clinical and the parental perspectives. When turning to research to delve deeper into the issue, the CNFUN team also found there to be few, if any, studies that explored the parental perspectives of their premature babies. As a result, the Parent Voices project was born to explore the topic more deeply.
From the start, the folks at CNFUN knew that they needed to engage parents as partners in research and set about assembling a team of researchers and preemie parents to co-design the foundations of the project. The results of this collaboration became a series of studies aimed at defining important preterm outcomes and improving understanding of parents’ views on meaningful outcomes for their preemies. The first study of the series has recently been published (https://fn.bmj.com/content/early/2021/11/23/archdischild-2021-322711) and the results are fascinating and reassuring: parents do resoundingly rate their child’s health differently than clinicians and view the outcomes of prematurity with a lens beyond the Bayley.
The study conducted interviews with 248 parents of premature babies at their follow up appointments over a period of 12 months; results showed that the vast majority of parents in the study perceived their children’s health overall as “good”, despite any developmental challenges that had been identified in their children and regardless of the severity of those challenges. So, where a clinician might look at a Bayley score and conclude that the child was in poor health, the study found that the child’s parents would consider their child to be healthy overall.
The study also identified areas in which preemie parents had concerns about their children, the majority being outside of the developmental sphere that is typically tested during the routine neonatal follow ups. When asked, parents in the study identified wanting to see their child be less medically fragile overall, and have better nutrition and respiratory health. These findings seem to indicate that for families the well-being of their child, as opposed to their disability, is what is truly important when their child is being evaluated at a follow up clinic.
The next goal of the study is to use the results to fundamentally change the way that a preemie’s health is looked at at follow-up visits. The study will continue to include the parents’ voice in measuring outcomes that are meaningful to us and that create a more wholesome picture of our children - their challenges but also the many wonderful and unique ways that they interact with the world and bring joy to us as their parents.
*The Bayley refers to The Bayley Scales of Infant and Toddler Development, which is a series of standardized tests that are used to measure language, thinking and moving development in children. Bayley scores can be used to identify whether kids have a mild or severe developmental challenge. This information is often used by doctors to give information to parents of preemies.
Melissa Jones is the parent of two preemies, as well as a public speaker, fundraiser, and a guest blogger at CPBF.
For more information:
Canadian Premature Babies Foundation
The Parents’ Voices Project is supported by the CHILD- BRIGHT Network, under Canada’s Strategy for Patient-Oriented Research (SPOR) initiative.