Parent-Centred Evidence-Based Care for Premature Graduates (Parent-EPIQ)

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Lindsay Richter
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Children born premature often face developmental challenges. These challenges are usually described to parents using medical terminology that can be difficult to understand. In this study, we will involve parents and families of children born premature to help identify what information is meaningful to them and to help put in place proven interventions that will improve the language and thinking abilities of children born premature. The aim of our national parent participatory study is to bring parents of children born very premature to the forefront of defining and guiding initiatives to measure and improve the development of children born premature.

The team provided a project update at the 2022 CHILD-BRIGHT Virtual Symposium. View it here.

Research theme:
BRIGHT Beginnings: Projects to optimize brain and developmental outcomes

Age range:
NICU–18 months later

Start date:
April 2017

Principal Investigators:
Dr. Anne Synnes, BC Women's Hospital
Dr. Prakeshkumar Shah, Mount Sinai Hospital

2020-21 Project Update

Read our 2020-21 update

2019-20 Project Update

On May 26, 2021, the CHILD-BRIGHT Network Parent-Centred Evidence-Based Care for Premature Graduates (Parent-EPIQ) team provided a project update at the 2021 CHILD-BRIGHT Virtual Symposium. View it here.

The Parent-EPIQ project has three main goals: We work with parents to improve how we communicate with families about brain-based developmental disabilities, we track the health and development of preemies, and we implement practices to improve their development.

We’re conducting studies to better understand how parents perceive their child’s development. Preliminary results show that parents tend to view their child’s development more positively than their health care providers do, and that a majority of parents also acknowledge developmental challenges. The study conclusions will help us provide parents with information they need in language they understand.

We continue to collect health data about preemies and make this information available to parents and health care providers. In December 2019, our second annual report provided information about the 6,432 preemies born in Canada between 2009 and 2016. In that time, there has been a reduction in incidences of cerebral palsy, hearing, and visual problems, but no improvement in thinking, motor, and language abilities.

Finally, our teams of health care providers and parents at 11 hospitals are implementing simple interventions to improve the language abilities of preemies. Families can do a lot by talking, reading, and singing to their newborn child! Educating medical staff and parents is also important; public libraries have been great partners to us in this respect.