For a few years now Annie Janvier in our unit has been developing programs of partnership with families. Using contacts with mostly “veteran parents”, and occasionally veteran patients, we have developed partnerships in research, patient care, and education.
The “PAF” team (équipe Partenariat Famille) have now published a report of how such family partnerships can be developed, how their impacts can be evaluated, and how our partnerships have developed and expanded as a result of those evaluations (Dahan S, et al. Beyond a Seat at the Table: The Added Value of Family Stakeholders to Improve Care, Research, and Education in Neonatology. JPediatr 2019;207:123-9 e2). Last year we published a review of integration of parents in research endeavours, (Janvier A, et al. Integrating Parents in Neonatal and Pediatric Research. Neonatology. 2019;115(4):283-91) and included in that review some of our endeavours and our research about family participation specifically in research. The group also published a review article about what has been published about family participation in the NICU (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).
The new article is an in-depth evaluation of the PAF team development, evaluation, and improvement, some of the mistakes made along the way, and some principles, many of which are probably generalizable, that can be used to help in the process.
The title, I think, is apposite, although many of us have been discussing how to involve parents over the past few years, often the involvement of parents has been seen as a “nice extra”. In contrast, I think we should consider that everything that we do will benefit from the full integration of resource parents in our teams, and that having a token parent seat at the table is not enough.
For anyone who doesn’t have full text access to the Journal of Pediatrics, Annie gave me permission to include the following link in this blog post https://authors.elsevier.com/a/1YnEL55CrsVAw the first 50 people accessing the link can download a free full text.
The PAF initiative costs very little, but there are some costs, mostly for parking, snacks, our wall of hope, and other minor costs. Our goal for fundraising this year is only $12,000 (Canadian), please consider making a small donation to our team. If you like this blog, please consider making a large donation!
Please Follow the link to our fundraising page. and click on “Donate Now”.