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

Looking back:
our work in Phase 1

Children born very preterm (or “preemies”) and their families may face numerous challenges. In Phase 1, the Parent-EPIQ project worked with parents to improve how we communicate with families about brain-based developmental disabilities, implement practices to improve the development of preemies, and track their health and development.  

Our research has revealed a need to change the information that is collected about preemies and how health care providers describe the lives of these children. We’ve identified outcomes and themes that are important to parents, such as motor and language skills, socio-emotional health and behaviour, and quality of life. We are now putting these findings to use by developing recommendations for health care providers and parents. 

“As a physician in the neonatal intensive care unit, I was trained to help children who were born preterm reach their ‘best’ potential. However, what is considered the ‘best’? Do we, health care providers, define ‘good’ or ‘bad’ outcomes? We have ignored a big part of the picture: parents and families. While most of the research used deficit-based outcomes, parents and families’ opinions should be acknowledged. This is the way to translate research and knowledge to practice. The importance of patient and family priorities,
as well as their research involvements, should be recognized.”
- Mei Mei Lam, neonatologist and CHILD-BRIGHT Summer Student 

In the past six years, we have been pleased to note an increasing awareness of the importance of patient-oriented research and outcomes identified by key stakeholders. Importantly, supports for parents of infants born premature have gotten better in Canada, especially with respect to peer support and advocacy.  

As we share our team’s work in various venues, we have noticed that the outcomes that matter are shifting and go beyond outcomes that are neurodevelopmental in nature. This shift is an exciting indication of the reach and impact of our study. We look forward to continuing this work in Phase 2 as we engage parents to improve important outcomes of preterm birth.  

An eye to the future: what Phase 2 has in store for us

Phase 1 was critical to establishing knowledge and understanding what outcomes are most important to parents of preterm children. Our Phase 2 goals include knowledge mobilization (which refers to the co-creation of knowledge by researchers and knowledge users and the use of research results and other knowledge to improve the health care system and its practices to enhance health outcomes) and implementation of our Phase 1 findings (or bringing them into our health care and community systems).  

As part of our knowledge mobilization plan, we aim to target three groups: parents; perinatal health care providers such as obstetricians and neonatologists; and the neonatal follow-up community (health care professionals who follows the children in the first few years of life). From the very beginning, we have engaged parents as partners in this work, along with health care teams. This engagement will continue into Phase 2 to ensure our knowledge mobilization will be successful due to our established relationships – especially with patient-partners.