A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity

A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity

Sullivan A; Arzuaga B; Luff D; Young V; Schnur M; Williams D; Cummings C

The Journal of Pediatrics

2022

Antenatal Consultation; Language; Periviability; Shared Decision Making

OBJECTIVE: To determine parental preferred language, terminology and approach after prenatal counseling for an anticipated extremely preterm delivery. STUDY DESIGN: Pregnant persons (and their partners) admitted at 22 0/7-25 6/7 weeks' estimated gestation participated in post antenatal-counseling semi-structured interviews to explore preferred language and decision-making approaches of their antenatal counseling session. Interviews were audio-recorded and transcribed, and thematic analysis of the data was performed. RESULTS: Thirty-nine interviews were conducted representing 28 total prenatal consults. Analysis identified two overarching themes impacting the whole counseling experience: the need for reassurance and compassionate communication, while parents traveled along a dynamic decision-making journey they described as fluid and ever-changing. Related themes included: 1) Finding Balance: parents reported the importance of balancing positivity and negativity as well as tailoring the amount of information, 2) The Unspoken: parents described assumptions and inferences surrounding language, resuscitation options and values that can cloud the counseling process, 3) Making the Intangible Tangible: parents reported the importance of varied communication strategies, for example visuals to better anticipate and prepare, and 4) Team Synergism: Parents expressed desire for communication and consistency among and between teams which increased trust. CONCLUSIONS: parents facing extremely premature delivery generally did not report remembering specific terminology used during prenatal consultation, but rather how the language and counseling approach made them feel and affected the decision-making process. These findings have implications for further research and educational intervention design to improve clinicians' counseling practices to better reflect parental preferences and ultimately improve counseling outcomes.

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