Mind the gap: Comparing parents' information needs about impending preterm birth to current clinical practices using a mixed methods approach.

OBJECTIVE

To identify parents' information needs about impending very preterm birth and compare these needs to current information practices in the Netherlands.

METHODS

Step 1: We surveyed  = 203 parents of preterm infants to assess their information needs. Data were analyzed using inductive thematic analysis. Step 2a: We collected information resources from hospitals ( = 9 NICUs) and via an online search. These materials were analyzed using deductive thematic analysis. Step 2b: We compared findings from Steps 1-2a.

RESULTS

We identified four themes pertaining to parents' information needs: (1) participation in care, (2) emotional wellbeing, (3) experience/success stories, and (4) practical information about prematurity. Clinicians' and were considered prerequisites for optimal information-provision. Notably, hospital resources provided mainly medical information about prematurity with some emphasis on participation in care, while parent associations mainly focused on emotional wellbeing and experience/success stories.

CONCLUSION

While parents demonstrate clear information needs about impending very preterm birth, current information resources satisfy these partially.

INNOVATION

Our multidisciplinary research team included both scholars and veteran NICU parents. As such, we identified parents' information needs bottom-up. These parent-driven insights will be used to design an innovative, tailored information platform for parents about impending very preterm birth.