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

Anne Sullivan; Bonnie Arzuaga; Donna Luff; Vanessa Young; Maureen Schnur; David Williams; Christy Cummings

doi:10.1016/j.jpeds.2022.09.003

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

J Pediatr. 2022 Dec:251:17-23.e2. doi: 10.1016/j.jpeds.2022.09.003. Epub 2022 Sep 9.

Authors

Anne Sullivan¹, Bonnie Arzuaga², Donna Luff³, Vanessa Young⁴, Maureen Schnur⁴, David Williams⁵, Christy Cummings⁶

Affiliations

¹ Division of Newborn Medicine, Boston Children's Hospital, Boston, MA; Harvard Medical School, Boston, MA. Electronic address: Anne.Sullivan@childrens.harvard.edu.
² Harvard Medical School, Boston, MA; South Shore Hospital, Weymouth, MA.
³ Harvard Medical School, Boston, MA; Division of Anesthesia and SimPeds, Boston Children's Hospital, Boston, MA.
⁴ Division of Newborn Medicine, Boston Children's Hospital, Boston, MA.
⁵ Institutional Centers for Clinical and Translational Research, Boston Children's Hospital, Boston, MA.
⁶ Division of Newborn Medicine, Boston Children's Hospital, Boston, MA; Harvard Medical School, Boston, MA.

Abstract

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 of estimated gestation participated in post antenatal-counseling semistructured 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 2 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 the following: (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.

Keywords: antenatal consultation; language; periviability; shared decision-making.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Communication
Counseling
Decision Making
Empathy
Female
Humans
Infant, Newborn
Infant, Newborn, Diseases*
Infant, Premature, Diseases*
Parents / psychology
Pregnancy
Qualitative Research

Abstract

Publication types

MeSH terms

Grants and funding