CNFUN Partnership with CPBF
CPBF is partnering with the Canadian Neonatal Follow-UP Network (CNFUN) on an initiative to amplify the voices of parents who have had children born preterm.
Together we have launched the campaign Parent Voices, Outcomes of Prematurity: From Knowledge to Care to bring evidence-based understanding and awareness to health care professionals and the community at large on what really matters to parents when it comes to the outcomes of their premature children.
The aim is to fundamentally change the way neonatal follow-up clinics measure preemie development by partnering with preemie parents and caregivers to design studies and amplify the outcomes that matter most to them.
CPBF is proud to help keep our network up-to-date with the latest news and discoveries as the CNFUN team completes their work.
The Parent Voices Project
The Parent Voices Project has examined the perspectives of parents related to the health of their premature children, the impact of prematurity on their lives, their need for information about prematurity, and any regrets they may have had surrounding their child’s premature birth. CPBF is honoured to collaborate in this important research.
Are you feeling scared and alone after your child’s premature birth? Do you ever wonder about the thoughts and experiences of other parents of children born premature? The Parent Voices Project is here to support you.
This project is part of the Canadian Neonatal Follow-up Network (CNFUN); a voluntary collaboration between Neonatal and Perinatal Follow-Up Programs in Canada and their multidisciplinary team members. It was developed in liaison with the Canadian Neonatal Network to facilitate collaboration in research, integrated data collection, knowledge translation and to improve the quality of care and long-term outcomes of children seen in their programs. CNFUN builds on the work done in Quebec by the Consortium de Recherche sur les Enfants Extrêmement Prématurés and is part of the MiCare group of networks.
For more information, visit the Canadian NeoNatal Follow-Up Network website at www.cnfun.ca
The Parents’ Voices Project is supported by the CHILD- BRIGHT Network, under Canada’s Strategy for Patient-Oriented Research (SPOR) initiative.
References for the Voice of Parents project:
Parental perspective on important health outcomes of extremely preterm infants
Health perception by young adults born very preterm
Guilt and regret experienced by parents of children born extremely preterm
Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad
Pulmonary important outcomes after extremely preterm birth: Parental perspectives
Fragility and resilience: Parental and family perspectives on the impacts of extreme prematurity
Redefining Neurodevelopmental impairment: Perspectives of very preterm birth stakeholders
Partnering With Parents to Change Measurement and Reporting of Preterm Birth Outcomes
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