Approach Speaks Louder Than Words: Parental Perspectives on Prenatal Counseling at Extreme Prematurity

Background: When counseling patients facing possible extremely premature delivery, language and terminology used by healthcare professionals, as well as decision-making approaches, are critical. Patient preferred language and counseling approaches remain largely unknown. Our study aimed to determine patient and partner preferred language, terminology, and approach following standard prenatal family counseling for an anticipated extremely preterm delivery.

Methods: This qualitative study was conducted in the perinatal units of three hospitals with level III NICUs. After obtaining informed consent, pregnant women (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, including beliefs and attitudes regarding terminology, content, and delivery of their antenatal counseling session. Interviews were audio-recorded and transcribed. Five researchers independently coded interview data then developed and refined the codebook through consensus meetings. Thematic analysis was performed by four researchers using an iterative process of data analysis and theory development.

Results: A total of 39 interviews were conducted representing 28 total pregnancies with 11 complete dyads, consisting of the pregnant person and partner (Table 1). Several themes emerged from the interviews (Table 2). Overarching throughout were the themes of the need for reassurance and the desire for compassionate and honest communication. Many parents acknowledged how difficult and emotional the conversations are, but this could be tempered by the manner the information was delivered and delivery in this way increased trust. Parents report searching for affirmation, reassurance, and support from the team at each stage in order to preserve hope. Stemming from these core themes were 4 subthemes: 1) Finding Balance: parents report the importance of balancing positivity and negativity as well as tailoring the amount of information given to the individual, 2) The Unspoken: parents describe assumptions and inferences surrounding language, resuscitation options, discussion of values, and hidden biases, 3) Making the Intangible Tangible: parents report the importance of effective communication and visuals to anticipate what to expect and prepare for the NICU, and 4) Team Synergism: parents expressed a desire for communication and consistency among and between teams which increased trust. These themes co-existed along the theme of the dynamic decision-making journey which parents describe as fluid and seek support throughout.

Conclusion: Families facing extremely premature delivery express common themes surrounding the need for consistency between team members in order to build trust and provide reassurance, which is integral to helping parents through a traumatic situation. While no specific terminology preferences emerged, families desire a compassionate approach and positive language balanced with realism. The results of this study will be used to inform survey development of a subsequent quantitative study and guide the development of educational interventions to improve clinician counseling practices reflecting language and approaches preferred by families.