One of the initiatives in our NICU is the implication of former parents of NICU patients; we have been examining ways of integrating former parents as support/resource/information sources for parents who arrive in neonatology with little idea of what to expect.
I remember, as a medical student, visiting the NICU for the first time and being blown away by how unique it was, how different to anything I had experienced before (and I had already done an adult ICU attachment), imagine how much harder it must be for a parent! Annie Janvier and her colleagues here at Sainte Justine have recently published an overview of how former NICU parents (“veteran resource parents”) are integrated into neonatal programs Bourque CJ, et al. Improving neonatal care with the help of veteran resource parents: An overview of current practices. Seminars in fetal & neonatal medicine. 2018;23(1):44-51. Parents have been involved in several different roles, in clinical care, but also in research and in education.
We have been trying to ensure that families are involved in every part of what we do, with the overall objective being to provide optimal care to babies that is consistent with the values of the community. Many of our research projects now include parents in various roles (including editing consent forms), they are also involved in teaching, including in simulations, and in helping new parents adjust to the NICU.
We have support from Prema-Quebec for some parts of the program, but parent-partners who are involved sometimes engender costs that aren’t being covered. So we have set up a fund with our foundation and are raising money to support the parent/partners initiative. I will be running a 10k this year, as I haven’t trained enough to do the half marathon, mostly as a result of my serial viral illnesses.
Please consider making a donation; it is very simple, just click here then click on “donate now” next to my name, Scotia bank and the foundation cover all the administrative costs, so every penny donated goes to our PAF-fund. (PAF is for Parternariat-Famille) If you go to the team page you can see the names of the team members, many of whom are NICU parents, as well as some NICU patient siblings and even one or two ex-NICU patients! Along with nurses, doctors, other healthcare professionals and 3 Barrington-Janvier kids.