In the first blog in this series, we explored the first study of the Parent Voices Project research project, which looked at the gap in perspective between clinicians and parents when it comes to neurodevelopmental outcomes for extremely premature children. You’ll recall that this study found that parents consistently rated their children as healthy and well overall, regardless of any measurable impairments confirmed during regular neonatal follow-up appointments. This discovery, long suspected but finally confirmed by research, has flipped how follow-up clinics are run on its head: clinicians have heard loudly and clearly that parents view their children through a strength-based lens, rather than through the deficit-based scale of measurement that has been used to evaluate their children’s progress until now.
In this installment of our blog series we’ll explore the second study conducted as part of the Parent Voices Project, which has been designed around pinpointing parent-defined outcomes of prematurity by researching how parents view the severity of specific neurodevelopmental impairments that children born extremely prematurely might have.
The study provided a series of ‘clinical vignettes’ to parents that contained short descriptions of a child and their development. For example, one vignette described a child who can sit with assistance but has stiff limbs and will likely need a wheelchair at school, though otherwise he can see, hear, speak, and learn like other children his age. The description was followed up by a series of questions rating how parents perceived this child’s overall health, whether they thought that the scenario described a severe health condition, and how information about the likelihood of this particular outcome is and should be communicated to parents in the NICU.
Not surprisingly given the discoveries of the first study, parents rated every clinical vignette presented in the study as less severe compared to the current Canadian Neonatal Follow Up Network definitions of neurodevelopmental impairment. Yet again, this shows that the current deficit-based approach to evaluating children born extremely prematurely is not in line with how the majority of parents and stakeholders view their children and gives further push to the need to redefine measurement tools and outcomes in a way that better represents the wonder and joy children born extremely prematurely bring to their families.
In addition to the above, the study was also able to pinpoint what outcomes are most important to parents when comparing the ratings between all of the vignettes. The 11 scenarios presented described motor, language, and cognitive delays; cerebral palsy; vision and hearing impairment; as well as a mix of the above outcomes, such as cerebral palsy and language delay. Researchers have been able to rank each scenario from most to least severe as rated by the parents, thus pinpointing the outcomes that parents would most likely need adequate information about in the NICU to make appropriate decisions for their children while there as well as to envision what life may look like when their children are discharged and grow. In this case, parents rated cerebral palsy and language delay as the most severe outcome, followed by vision impairment.
Future work by the Parent Voices Project team is looking at what parents think about communication in the NICU: what information they want, how it’s presented, and when they need to know the details. Stay tuned for a future blog post dedicated to this important topic!
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
Mèrn thee de deux enfants prématurés, Melissa Jones est aussi conférencière, agente de financement et blogueuse invitée à la FBPC.
Pour en savoir plus :
Fondation pour bébés prématurés canadiens
The Parents’ Voices Project is supported by the CHILD- BRIGHT Network, under Canada’s Strategy for Patient-Oriented Research (SPOR) initiative.