Preemies, Parental Perspectives, and Partnership in Research:
A Conversation with preemie parent and parent-researcher Rebecca Pearce
Welcome to the second blog in our series about the Canadian Neonatal Follow Up Network’s Parent Voices project. Our first blog post explored parental perspectives on their extremely premature babies and how they compared to neonatologists’ and researchers’ perspectives. In this blog, we speak to the project’s Parent-Researcher Rebecca Pearce about her motivations for and involvement with the Parent Voices project.
By Melissa Jones
Hi Rebecca! Thank you for taking this time to talk about your involvement with the Parent Voices project and the study that’s been recently published. It’s always a treat to speak to another preemie parent, especially one that’s as passionate and committed about impact as you are!
First, can you tell us a little about yourself and what inspired you to get involved as an advocate for preemies?
I am a long-time high school science teacher in Montreal. I am the mom to two girls, Maren, who is 12 and Elinor who is 9 (and new puppy Rusty), and have been married to my husband Jason for almost 19 years. In 2009 I gave birth to twin daughters, Maren and Lily, who were born at 25 weeks and 5 days GA weighing 760g and 840g. I had unexpectedly started bleeding and spent a couple of days in Ste-Justine hospital in Montreal before giving birth. This was my first pregnancy and I knew next to nothing about preterm birth or prematurity. A week after I gave birth, Lily died of an infection, and Maren was a very sick baby who would spend 4 months and 1 week in the hospital, which was a terrifying experience. While in the hospital I started reading a lot of published research about the outcomes of extremely preterm birth, wanting to know what impacts that being born 4 months early might have on Maren and what this could mean for us as a family. The research was really unsatisfying from a parental perspective - very, very medicalized, deficit-based, and focused on NDI (neurodevelopmental impairment), for example learning differences or disability, cerebral palsy, vision and hearing problems. Reading this as a parent was gut-wrenching, and I couldn’t figure out from the research what NDI actually “looked like”. For example, if a child has an IQ that is 8 points lower than the average for term-born children, what does that actually mean in a practical sense? If a child has cerebral palsy, or needs a hearing aid, what impact does this have on a day-to-day basis on the functioning of the child and their family? There was also little to no research that actually spoke to parents to see how they were doing and what they thought about their children, or research directly involving premature kids and their thoughts about their lives. Are they happy? Do they have friends? Are their parents constantly concerned about them? How are they doing generally in school? To me this has a lot more relevance than an IQ score, for example. I am currently a 5th-year PhD candidate in the Faculty of Education at McGill, and my doctoral project involves examining extremely premature students who are now in secondary school as learners and doers of mathematics, and how they, their parents and their teachers view them as students. It has been so gratifying to have the opportunity to speak with these students and their families, to learn more about them.
Can you give us a little background on how you became involved with the CNFUN team on the Parent Voices project and a bit about your role in the work?
One of Maren’s doctors was Annie Janvier, who is a neonatologist and bioethicist at Ste-Justine, and also the mother of Violette, who was born extremely prematurely 16 years ago. Annie recognized that I asked a lot of questions about research related to premature children, and she has been kind enough to involve me in projects over the years. She approached me to join the Parents’ Voice Project, which is supported by CNFUN, as the parent representative. In this project, parents were asked semi-structured interview questions that they could respond to on paper, online, verbally over the phone or in person. These questions involved parents’ thoughts about the health of their babies, the impact of prematurity on their lives, their need for information about prematurity, and any decisional regrets they may have. The data were analyzed thematically meaning we read over the parent responses and looked for consistent ideas. Then all the responses were coded based on these themes or ideas, and all responses were examined by at least two project team members. As a parent, I was able to offer a perspective that often differed from that of other members who were doctors, medical students, sociologists.
The project has really prioritized parent perspectives in order to make some much-needed adjustments to the neonatal follow up work. What are some concrete examples of how you were able to shape this as a parent partner on the team?
As mentioned, I had a direct role in helping to interpret the data from this study, and I helped in the writing of the paper and the crafting of the overall messages. Perhaps most importantly, for the past several years I have been directly involved in presenting the results of this important research at conferences, both in-person and online, as well as to different hospitals and organizations. We have presented at the 2020 EPIQ conference, for the CHILD-BRIGHT network, Ste-Justine Hospital, Université Laval, the Cleveland Clinic, Nationwide Children’s Hospital, the Gravens conference, and the Pediatric Academic Societies conference. The findings are more impactful when they are presented by a parent who has been involved with the research and has had both experience in the NICU and raising an extremely premature child. Outcome research has generally been undertaken without parents and the data interpreted by clinicians and researchers, who have a very different lens. More and more frequently, funding agencies are requiring researchers to include parent partners on their grant applications. Hopefully we can slowly convince researchers and follow-up clinicians to think about the kind of data they are collecting and the outcomes they are prioritizing for research, and how these align with what parents consider to be important.
The first study from the Parent Voices project has just been published, which synthesizes feedback about neonatal follow up appointments from the parental perspective and looks at outcomes for preemies that were most important to parents. Did the results surprise you at all? What was the most unexpected result? What was the result that surprised you the least?
As the mom of a child born extremely premature, I can’t say that any of the findings were surprising to me, however they were probably surprising to neonatologists, who rarely see children after they leave the NICU, or to individuals who don’t know much about prematurity. The result that surprised me the least was that very few parents (7%) viewed their child’s extremely premature birth as having only negative impacts on their life or the life of their family; most parents recognized positive and negative impacts associated with premature birth (74%) and 19% of parents said their child’s birth had only positive impacts on their life. Considering that outcome research is generally all negative, this is a pretty important finding. The result that surprised me the most is that 16% of parents still felt guilt associated with their child’s premature birth. We know that most premature births are difficult to predict and can’t be prevented, so it’s sad and maybe a little concerning that these parents feel that there was something they could have or should have done. It was also interesting to read that parents rated the health of the premature children very highly, even the parents of children with diagnosed neurodevelopmental impairment, when the societal narrative is that these children are often sick or unhealthy.
There is lots of other work coming out in the months to come from the Parent Voices project. Can you spill some details about what we can look forward to next?
Stay tuned! There will be future blog postings about more aspects of this project, for results about a fascinating study regarding how parents view neurodevelopmental impairment compared to how clinicians and the Canadian Neonatal Follow-Up Network classify impairment. We are also working as a network to try to modify how follow-up data collection is done in Canada; hopefully the Parent Voices project will help to advance this goal!
Thanks for taking the time to chat, Rebecca!
Rebecca Pearce is a long-time member of the équipe Partenariat Famille (PAF) Sainte-Justine, a team comprised of a group of veteran parents at CHU Sainte-Justine in Montreal, Québec, who act as a resource for families new to the NICU and who contribute to improving clinical care, research, and teaching by offering a critical parental viewpoint.
Rebecca has published several opinion pieces about how existing outcome research fails to meet the needs of parents or preterm children.
Rebecca is a secondary science teacher in Montreal and is a third-year Ph.D. Candidate in the Department of Integrated Studies in Education at McGill University, where she is studying preterm children as mathematical learners and doers. She is also the chair of the CPBF’s Family Advisory Committee.
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
Mère 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