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One out of ten newborns is born preterm, meaning birth occurs more than three weeks earlier than the expected date. These babies have higher morbidity and mortality, requiring special medical support from Neonatal Intensive Care Units (NICUs). For parents, a preterm birth is associated with uncertainty, stress, and potential loss. Effective information exchange about impending preterm birth between families and medical staff is necessary to improve the well-being of both newborns and parents. However, current practices do not adequately meet parents’ needs.
A study published in PEC Innovation compared current information practices for impending preterm birth and in this study identified parents’ needs of information. The surveyed Dutch parents (N = 203) of preterm infants to assess their needs, analysed information resources from NICUs (N = 9) and via online search and compared both results.
Importance of information exchange
Parents should be able to participate in the care of their newborn as well as decisions regarding their treatment. This requires open dialogue between families and medical professionals who also must provide all necessary information. Currently, there are no standardised recommendations on how to inform parents at risk of preterm birth, and accessible information is generally lacking. The study shows that this insecurity and uncertainty can cause stress, anxiety, anger, and grief in parents. About two-thirds of parents of preterm infants were informed about prematurity, mostly by obstetricians and paediatrician-neonatologists. While two-thirds were satisfied with the information they received, more than one-third sought additional information, with only half finding what they needed. The study concludes that there is an urgent need to adapt the provision of information.
Key themes for parents
In this study, parents identified four key themes as most important: participation in care, emotional well-being, experience stories, and practical information. They wished to actively support their infants and play a crucial role in their care from the very start. Emotional support after birth is significant for parents’ well-being. Hearing stories from other families and exchanging experiences make parents feel less isolated and help them relate to others in similar situations. Parents also desire practical material, such as videos or photos of preterm infants, to better prepare for all aspects of prematurity. The study authors found that parents expressed a higher need for information about long-term consequences than for learning about immediate complications and risks. Developing a network of families with similar experiences could help against anxiety and parents could support each other.
Communication and empathy
Parents in the study highlighted the importance of clinicians having strong communication skills and sufficient time during information provision. Empathy, knowledge tailored to parents’ needs, and clarity and completeness of the information are essential. Discussing the possibility of a preterm birth during midwife visits can also raise awareness.
Current practices in NICUs
The studied NICUs lacked standardised protocols for providing information to parents about impending preterm birth. Some units provided flyers, a few had additional information on their websites, and only one had a photo album of preterm infants. The dosage of information is a sensitive issue. The study authors noted that insufficient information could induce fear, while too much could be overwhelming. Most pregnancies are carried to term, so it is crucial to avoid unnecessarily frightening pregnant women.
Paper available at: PEC Innovation
Full list of authors: van Zijl, A. C., Obermann-Borst, S. A., Hogeveen, M., Verweij, E. J., de Vries, W. B., Geurtzen, R., & Labrie, N. H.
