Poster Only Presentation
Concurrent Session 2A - Neonatal Clinical Epidemiology
Anne Synnes, MD
Neonatologist and Director of Canadian Neonatal Follow-Up Network
Department of Pediatrics, University of British Columbia and BC Children’s and Women’s Hospital and Health Centre, Vancouver, BC, Canada.
Introduction: Extremely preterm children are at higher risk of adverse health and neurodevelopmental outcomes. Published outcomes have focused on the burden of prematurity on parents and society. Indeed, parents of children hospitalized in the NICU have higher rates of anxiety, depression and traumatic stress. However, other outcomes, such as positive transformations have not been investigated.
Methods: Over a one-year period, parents of all children born <29 weeks’ gestational age who were between 18 months and 7 years old at their follow-up visit were approached to participate. They were asked about the impacts of prematurity on their and their family’s life: positive, negative or both. We requested parents through open-ended questions to justify their answers. Responses were analyzed using mixed methods.
Results: Among parents (n=249, 98% participation rate), 16% reported only positive impacts, 76% both positive and negative impacts, and 8% only negative impacts. Positive impacts included: improved outlook on life, such as gratitude and perspective (49%), stronger family relationships (33%) and the gift of the child (28%). For example, one participant said: ‘My child is a miracle in our lives and his strength and resilience give me strength and resilience.’ The main negative themes reported were stress and fear (39%), loss of equilibrium due to their child’s medical fragility (33%) and concerns about developmental outcomes including the child’s future (18%) such as depicted in the following quote: ‘Although he is doing amazingly well there is still a lot of anxiety on what the future will hold.'
Conclusion: Parents report both negative and positive impacts after experiencing extremely preterm birth. The scientific literature tends to emphasize adverse outcomes and challenges only, but the parental view is balanced. Such balanced perspective may help harness resilience among new families.