Fabiana Bacchini: A Parent Partner’s Advocacy Journey
In October 2019, SKIP partnered with Dr. Melanie Barwick, Senior Scientist, Child Health Evaluative Sciences at SickKids, to offer her knowledge translation (KT) workshop for national and international participants at SickKids in Toronto. Fabiana Bacchini, Executive Director of the Canadian Premature Babies Foundation (CPBF), attended the workshop both in a professional capacity and as a patient/parent partner. Below is what she had to say about her experience.
When my surviving twin, born at 26 weeks in 2012, was in the NICU, I do not remember anyone talking to me about pain. I remember sitting by the incubator wondering if he was in pain as he was intubated for seven weeks. He would not cry or make any sound. I knew he wasn’t comfortable by his facial expressions. Getting involved with SKIP was first and foremost a reflection on those days in the NICU and how much we still need to educate health care providers on this topic.
Gabriel has quad cerebral palsy and dystonia. Our “hospital life” never really ended after being discharged. My involvement with SKIP made me a better advocate. During a SKIP session, I spoke up when one hospital was proud to share how they were implementing strategies to manage kids in pain. My son had had a terrible experience just a few months prior at that same hospital with the insertion of an IV three times during the same admission.
Knowledge is power and I’ll never be quiet about it again.
Professionally, the workshop with Dr. Melanie Barwick was incredible. I’ve been involved in many research projects over the last eight years, and I had never truly understood the research cycle and how knowledge translation was applicable. I want to contribute and give back and I think it’s important for families to be included as advisors, but nobody explains to you what knowledge translation means. Why does a lot of research only stay research and never get implemented? For me, it was a big “Aha!” moment.
When I took Melanie’s workshop, I had already been running the CPBF for a year, and I was writing letters of support for research. But I wanted to know more and engage parents. A lot of things researchers write, average people don’t understand. The knowledge I gained has helped me to be an active participant in research projects with CPBF, and helped me ask better questions and learn how our organization can really support KT.
In February, I was at a neonatology conference in Banff. There’s a doctor I really like, and he was talking to me about his research. When I asked him why he doesn’t engage parents, he said, “I don’t know how to.” Last week, I got an email from his assistant asking for help getting a parent involved as an advisor!
We have shared the tools created by SKIP with the NICU families we serve. I don’t think families in the NICU really know about pain – I certainly didn’t.
I remember a nurse telling me premature babies don’t feel pain. I was even afraid of asking if a procedure was painful. But since working with SKIP, I know we have to educate families and raise awareness that babies do feel pain and as parents we have a role in that.
I love the work that SKIP does. For my own son, I’m a mama bear. Recently, I was really angry because they wanted to put an IV in my son without any pain relief because the “cream takes too long to work.” That is a hospital problem — they have so many blood tests to do in one day. I know how to advocate, but what about the parents who don’t?
But the burden of advocating should not be on parents — it’s about changing protocols and how you do things.