Evaluating parental perceptions of written handbooks provided during shared decision making with parents anticipating extremely preterm birth

Objective: To explore parental perceptions of written handbooks provided to them during antenatal counseling for anticipated extremely preterm birth.

Study design: This study involved a prospective convenience sample of parents anticipating delivery between 22 weeks + 0 days and 25 weeks + 6 days gestation. The antenatal counseling involved a shared decision-making process. In-person interviews were conducted using a semi-structured interview guide to gather feedback about new parent handbooks developed to support decision making. The questions during the semi-structured interview targeted seven main themes: overall impression, timing, graphs/tables, formatting, imagery, ease of use and understanding, and content. The interviews followed an antenatal consultation and provision of the appropriate handbook(s) by a neonatologist. Interviews were transcribed verbatim and thematic analysis of the data was completed.

Results: Eleven parents were interviewed. All parents described the provision of the handbook(s) following the consultation with a neonatologist as the ideal time. All parents considered a visual representation of the data to be invaluable. Parents considered the handbooks easy to understand and straightforward. Some parents were satisfied with simple information, which helped them feel less overwhelmed; others felt the depth of information was insufficient. Parents preferred a paper copy to electronic. Reactions to the photo of an infant receiving intensive care varied; some parents felt frightened, others felt comforted.

Conclusion: Overall, parents positively evaluated the handbooks, supporting their utility for parents anticipating extremely preterm birth. Concrete suggestions for improvement were made; the handbooks will be modified accordingly. Parents at other perinatal centers may benefit from receiving such handbooks.