A qualitative study of parental perspectives on prenatal counseling at extreme prematurity

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.

Prenatal counseling for families facing possible extremely premature delivery remains ethically and practically challenging for perinatologists and families. Clinicians in maternal–fetal medicine and neonatology need to quickly establish a trusting relationship with families while conveying complex medical information, sensitively eliciting family preferences and values, and carefully explaining management options to arrive at a shared decision surrounding delivery and resuscitation.^1–3 This must be accomplished despite differences in training, practices, and perspectives between specialties, and the diversity of parental experiences and expectations during decision-making at extreme prematurity.^4,5

Improvements in patient engagement, satisfaction, and clinical outcomes have been demonstrated in many areas of medicine when clinicians engage in personalized, patient-centered health care.^6–8 Thus, patient-centered communication and personalized care have been the cornerstone of shared decision-making practices for decades.⁷ In perinatal medicine, this concept has been promoted,^9–11 although parental perspectives on specific aspects of communication during prenatal consultation at extreme prematurity have not been thoroughly explored.

Many clinicians continue to emphasize cognitive information and statistics during prenatal consultations at extreme prematurity,^12–15 despite parental preferences for focusing on religion, spirituality, and hope and less on predicted morbidity and death.^16–20 In addition, clinicians may inadvertently frame resuscitation discussions around their own biases related to disability, race, and/or socioeconomic status, swaying parental decision-making.^21–23 Language and terminology used by counseling clinicians also may have an impact. Previous work exploring parental preferences for approach and terminology using a hypothetical scenario (possible extremely premature delivery at 23 weeks of gestation) found that, overall, parents preferred specific positive and even negative words over others.²⁴ Mothers reported preferences for how physicians might better communicate and again prioritized personalized information over lengthy explanations of possible medical complications.²⁴ Therefore, the objective of this study was to more deeply explore parental experiences and perspectives after prenatal consultation for anticipated extremely preterm delivery and delineate preferred decision-making approaches and terminology.

Methods

This study (the qualitative arm of an exploratory mixed-methods study) was conducted in the perinatal units (maternal–fetal medicine/neonatal intensive care unit [NICU]) of 2 large academic medical centers and one large community hospital in the northeast. Recruitment occurred over a 15-month period with a 6 month pause due to the coronavirus disease 2019 pandemic.

Study Ethical and Regulatory Approval

The study was approved by the Boston Children’s Hospital Institutional Review Board (IRB), which acted as a single, reliance IRB for all participating sites (IRB-P00030146). This research is part of a larger behavioral intervention study, registered with ClinicalTrials.gov (NCT03819933).

Study Population/Sample

We recruited English-proficient pregnant people at least 18 years of age at 22^0/7-25^6/7 weeks’ estimated gestational age, and their partners (if present) who presented to a participating site with threatened preterm delivery, and had antenatal NICU consultation. Exclusion criteria included non-English proficiency, gestational ages <22 or >26 weeks, known fetal congenital anomalies, and those whom the medical team asked not to approach due to extenuating circumstances (ie, maternal psychiatric history). Families counseled by neonatologists who were members of the research team also were excluded. We aimed to enroll up to 30 pregnant people and their partners across all sites or until thematic saturation achieved.

Data Collection

A semistructured interview guide was developed from existing literature, then revised based on expert feedback, including family faculty advisors. Questions explored opinions, beliefs, and attitudes regarding the language, terminology, content, and delivery of their antenatal counseling session. Eligible pregnant persons and their partners were approached within 96 hours of consultation by the study team, regardless of delivery. This time frame was chosen to minimize recall bias and maximize recall of the consultation experience. All participants provided written or electronic consent before participation.

Interviews, either in-person or via secure telephone, were audio-recorded and uploaded directly onto a secure server, then transcribed verbatim and reviewed for accuracy. Participants received a $25 gift card as a token of appreciation.

Data Analyses

Transcripts were uploaded to Dedoose (Version 8.0.35; SocioCultural Research Consultants).²⁵ Open coding of 3 transcripts was performed to generate an initial codebook, which was revised iteratively. Five trained coders independently read and coded transcripts to ensure reliability of the coding scheme. Each transcript was blindly reviewed by 2 coders for inter-rater consistency. Coding discrepancies were resolved by consensus. Iterative thematic analysis was performed by 4 researchers.

Results

Of the 54 eligible potential participants approached, 42 agreed to participate, 3 did not complete the interview after providing consent, and 12 declined. Of those who declined, 8 declined immediately, citing imminent delivery (n = 1), overwhelmed (n = 2), recent stressor involving car accident (n = 1), and unknown despite prompts (n = 4), and 4 did not respond to follow-up phone calls/emails. A total of 39 interviews were conducted, representing 28 total prenatal consults with 11 complete dyads (pregnant person and partner). Thematic saturation was achieved. Table I describes participant characteristics. The median participant age was 32 years. The median gestational age at consultation was 24^4/7 weeks. Approximately two-thirds (69.2%) self-identified as White, 15.4% Black, 10.3% Asian, and 5.1% as Hispanic. Participants were highly educated (38% college and 45% with advanced degree), with 27% of pregnancies resulting from in vitro fertilization.

Table I.

Participant demographics

Demographics	No. (%)
Sex
Female	28 (71.8)
Male	11 (28.2)
Age, y	32 (median); 29, 36 (q1, q3)
Race/ethnicity
White	27 (69.2)
Asian	4 (10.3)
Hispanic/Latinx	2 (5.1)
Black or African American	6 (15.4)
Highest education completed
High school	5 (17.2)
College	11 (37.9)
Advanced degree	13 (44.8)
Unknown	10
Religious or spiritual person	20 (58.8)
IVF pregnancy	10 (27)
Gestational age at time of consult	24 4/7 (median), 22 1/7–25 6/7 (range)
	22–22 6/7 (n = 2)
	23–23 6/7 (n = 10)
	24–24 6/7 (n = 9)
	25–25 6/7 (n = 7)
Maternal–fetal status
Delivered, live infant	5 (17.2)
Delivered, infant died	1 (3.4)
Still pregnant	23 (79.3)
Indication for consult
Maternal indication	24 (85.7%)
Fetal indication	0
Both maternal and fetal	4 (14.3%)

IVF, in vitro fertilization.

Several major themes emerged from our analysis (Table II; available at www.jpeds.com); an ongoing dynamic decision-making process for parents served as the foundation for all other themes. Throughout this process, there was a ubiquitous need for reassurance and a strong desire for compassionate communication in lieu of specific terminology preferences by clinicians and staff. Four novel subthemes within compassionate communication emerged: making the intangible tangible; the unspoken; finding balance; and team synergism, which we define and further describe in the sections that follow. The Figure illustrates the interconnection between themes/subthemes.

Table II.

Themes and illustrative quotes

Dynamic decision-making

1. “It was a lot...to take in. Particularly because our plan had changed so much throughout the day, because my condition and the baby’s condition was changing, like really quickly. So, the plan kept on changing.” (Int 22, patient)

2. “We did decide that we [wanted to] try to give him the most care that we can, but it’s also kind of a play it by ear–type situation ‘cause it all depends on when he comes and ‘cause if he comes tomorrow, it might be a different conversation than if he comes in a couple of weeks.” (Int 9, patient)

3. “I have thought of a few questions in the interim, so I do think it’s helpful to have them see me again. They did say...I could always send along questions and things like that. But I do think sometimes—you just need to process, so I guess follow up is probably good too. You know, because, I’m...a school teacher, and I know that a lot of times people don’t have questions in the moment, and they have them later.” (Int 14, patient)

4. “You know, by this point today, now this is what—day 4 in the hospital—I’ve come to gain trust from them. I don’t know if I would have said this day 1, but...once I trust them, I don’t need every decision-making rationale.” (Int 17, patient)

5. “...It’s a combination of everything, right? Proper information from the doctors, proper support from the doctors, and your family, and all of that. And then it’s your internal gut feeling that ends up being the right call.” (Int 27, patient)

6. “I think the biggest role was just providing accurate information, and then from there... it would definitely be a family decision, because there’s so much—it has to be based on what we know about ourselves... And so when they got a sense of where we were in terms of the seriousness of wanting to see this pregnancy through, then that allowed them to know what to do next.” (Int 21, patient)

Need for reassurance

1. “When you’re scared and you’re anxious and everything is on the line, you just want that reassurance from the experts.” (Int 14, partner).

2. “They were honest about—because a lot of my questions were about being able to—priority being their health of course, and their survival, but...what role do parents have after the babies are born...where does the parent come in? So, they were able to...give us a sense of what our role could look like, which was really important to me. To us, really.” (Int 21, patient)

3. “I don’t think that I was waiting for the NICU to make that decision. I think I was waiting for them to validate...what I had already thought.” (Int 27, patient)

Compassionate communication

1. “They were very tactical in the way that they shared that information. They didn’t just say okay, your baby is probably not going to survive. They were very careful and gentle with the way that they worded what they were saying...they had very soothing mannerisms in the way that they spoke to us...so it was very helpful.” (Int 28, partner)

2. “I think the biggest thing really is...remembering that...for a lot of people that end up in these circumstances, there’s a really long journey that got them here, and I’m sure they know that factually, but I think sometimes it can be hard to really connect with how that affects them in the moment. When they’ve gone this long road...all of the sudden things start unraveling. It can feel very much like they don’t have any ground to stand on, like they’re just lost, so I think just reminding yourself of that, before you go into the conversation, that this patient may be feeling very lost—like they just had the rug pulled out from under them.” (Int 28, patient)

3. “They asked me if I knew the sex of the baby. They asked if I had a name picked out and if they could use like the baby’s name if I was comfortable with that, which made me feel a lot better too that they were using the baby’s name. Cause it’s less discouraging than just calling him ‘the baby’.” (Int 9, patient)

4. “Probably not be too forceful, but don’t sugarcoat it. But also just keep informed...keep in mind the kind of words they use and to see how they could ease that conversation up, with just being straightforward, I think that would help a lot of people honestly.” (Int 25, patient)

The unspoken

1. “I think understanding exactly what comfort care meant took a little bit of time, but not too much, I kind of picked up on what that meant. I think I inferred, based on tone.” (Int 17, patient)

2. “They did present options, but they weren’t really clear about what they meant... some people choose to have the baby monitored, and some people choose to not have them monitored. And I think it needs to be more explicitly described what they mean. So, when we say we’re not monitoring the baby, we’re not checking for his heart rate, so if he passes away, that’s...a risk that you take. I think that that definitely needs to be more explicitly stated, because both my husband and I had...a hard time understanding where they were going with that.” (Int 18, patient)

3. “And that was actually something my husband and I had wondered about. ...So what if it doesn’t work... do we take her body or what happens to her body? Does she get to have a funeral? Those were things we were wondering...Like, will she just be lying there if something went wrong? We still wonder that now so yeah no one brought up any of that... I think...knowing what would have happened if she had not survived would have made me feel a little more comfortable.” (Int 2, patient)

4. “Even if [physicians] just said...‘we’d love for you to think about, or we want you to consider what that might mean for you...’ We just encourage parents to consider that, so that when they have harder decisions to make moving forward, they...already have a sense for what those values are.” (Int 14, patient)

Making the intangible tangible

1. “I’m a very visual person so I had really no concept, like, how big is this baby gonna be...I was really scared, when she went in for the C-section, to see the baby afterwards I was really scared because I really had no idea what to expect. Like, is she going to fit in my hand?” (Int 2, partner)

2. “I’m a very visual person, so when they talked about like, okay, and then you can go to the NICU, and there are curtains that they like pull around—I’m trying to like visualize that in my head. ...I think actually, again, because I just like having that information, if they had some kind of like a printout, like these are the statistics... And then, there’s like a picture of like what the NICU looks like, because...I don’t know. I’ve never been to a NICU before. So, I just like Googled it, but they all look different.” (Int 11, patient)

3. “There’s a lot of anxiety going on, so hearing them talk, explaining the process, the possibilities of what could happen and when, how long the baby might have to stay in the NICU, depending on how early it’s conceived or what emergency measures might have to be taken. It was very...calming. Almost therapeutic for me.” (Int 14, partner)

4. “...The [meetings] where they...ended with...what we’re doing next...a next step, or a next thing we’re waiting to hear back on...was probably the most helpful. Because it gave us a little bit of...a direction, a sense of some awareness of where we were at... a next milestone...[and] made us feel a lot more like we were on a path, rather than we were just really confused or lost.” (Int 28, patient)

Finding balance

1. “I realize it’s such a hard balance to make sure that the patient is not only informed and aware of those things, but also balance that with... [the physicians are] very hesitant to give hope, especially this early, but emotionally even just finding some way to give support I think is important.” (Int. 3, patient)

2. “And so, there’s that balance of talking to enough people to really understand who you are, as well as kind of—even having time to digest the information you’re receiving. I think that’s why the staggered approach is kind of a nice beneficial—you’re able to understand where you are and take a beat, because it’s a long day.” (Int 17, partner)

3. “Sometimes yeah, it gets overwhelming going over the bad over and over again. It can be to the point where it’s like, alright, I already know the statistics. I know this one very well, and we’ve talked about it. But overall, they do a good job of balancing it. It’s just – it can be a little much sometimes.” (Int 16, patient)

4. “...A mixture of trying to be frank, with letting us know the reality of the circumstances, while still trying to—I know hope is interesting being in a context like this, they provided a little bit of hope or comfort, while delivering information that can be pretty shocking.” (Int 21, patient).

Team synergism

1. “She was very optimistic about issues and said, yeah, we can do that. Whatever you want. Whereas another team wasn’t as optimistic and made me feel like my gosh, I broke down... am I making the right choice? Am I killing my daughter? What am I doing? ...That was the only thing that I wish was a little bit more consistent.” (Int 20, patient)

2. “It’s...nice to have them in the same setting, where everyone is on the same page...It puts everything in a better perspective and gives a team plan.” (Int 16, patient)

3. “We were getting the same information over and over again, which, I think is good. It helped me...especially hearing it from multiple people like, when there were changes in staff and hearing the same thing, the same plan...carrying through.” (Int 2, partner).

Figure.

Schematic representation of the interconnection between the identified themes and subthemes. The dynamic decision-making journey for parents served as the foundation upon which all other themes rested. Throughout this journey, there was an overarching need for reassurance by clinicians and staff as well as a strong desire for compassionate communication. Within this theme of compassionate communication were four subthemes: making the intangible tangible; the unspoken; finding balance; and team synergism.

Dynamic Decision-Making

The foundational theme of parental decision-making about delivery and resuscitation was found to be a dynamic process, characterized by ongoing decision-making, fluctuating with new information, changes in clinical status, and/or newly recognized or understood parental emotions, beliefs, and values.

“It was a lot...to take in. Particularly because our plan had changed so much throughout the day, because my condition and the baby’s condition was changing...quickly.”

(Interview [Int] 22, patient)

Overall, participants expressed a need for information to make well-informed decisions, although the specific amount desired varied, and a need for time to process information and discuss with their partner or support person. Consequently, parents perceived their relationship with the care team as changing over time; trust was built or degraded depending on the teams’ approach, quality of the communication, and perceived support:

“...by this point today...I’ve come to gain trust from them. I don’t know if I would have said this day one, but...once I trust them, I don’t need every decision-making rationale.”

(Int 17, patient)

Ultimately, parents sought guidance from clinicians throughout their hospitalization but wanted autonomy to feel supported in decision-making.

“...It’s a combination of everything, right? Proper information from the doctors, proper support from the doctors, and your family...And then it’s your internal gut feeling that ends up being the right call.”

(Int 27, patient)

Most parents indicated a preference for a shared decision-making approach, and others preferred to make the final decision after input, and a few indicated that the decision was not theirs to make (eg, was up to God, or their baby).

Need for Reassurance

Parents reported feeling overwhelmed, stressed, and confused; the need for reassurance, described as clinician validation of parental emotions, as well as affirmation and acceptance of their decisions, permeated the entirety of the parental experience. One participant commented,

“When you’re scared and you’re anxious and everything is on the line, you just want that reassurance from the experts”

(Int 14, partner)

Participants also reported a lack of control or helplessness, especially when they felt their roles as parents were not recognized or respected.

“...what role do parents have after the babies are born...where does the parent come in? So, they were able to...give us a sense of what our role could look like, which was really important to me. To us, really.”

(Int 21, patient)

Parents acknowledged that clinicians could not always provide concrete information or predictions but desired reassurance from them nonetheless. Team communication, consistency in messaging, and inclusion of parents as “team members” increased feelings of reassurance. Finally, participants expressed finding solace in knowing that other parents also chose a particular decision and were comforted when clinicians shared this. Another noted,

“I don’t think that I was waiting for the NICU to make that decision. I think I was waiting for them to validate...what I had already thought.”

(Int 27, patient)

Compassionate Communication

Parents universally acknowledged the difficulty of conversations surrounding anticipated extremely preterm birth, but felt this could be tempered by the manner of delivery, such as with compassion, empathy, and humanism, a theme we defined as compassionate communication. Sensitive bedside manner mattered for many: sitting down for the conversation, “being human,” and listening:

“They were very tactical in the way that they shared that information. They didn’t just say okay, your baby is probably not going to survive. They were very careful and gentle with the way that they worded what they were saying...they had very soothing mannerisms in the way that they spoke to us...so it was very helpful.”

(Int 28, partner)

Compassionate communication increased parental trust in their clinicians. Specific terminology was generally not found to be very important, but personalized communication strategies and clinicians who connected on a personal level were preferred. Parents generally liked when clinicians asked about and then used their baby’s name throughout the consultation. Parents overwhelmingly wanted clinicians to be honest and not “sugarcoat” any information. Four novel subthemes emerged.

The Unspoken

This theme articulates the unsaid, the assumed, the implied, and the biases that can potentially cloud the counseling process and affect decision-making. Parents described several unspoken phenomena with clinicians: clinicians not describing all possible options; talking around a specific (often uncomfortable) topic but not discussing it directly (eg, death or disability); using terminology that was not clearly explained, leaving parents to infer what it meant; message framing, and even recognition by parents of clinicians’ personal biases. One participant reflected:

“I think understanding exactly what comfort care meant took a little bit of time, but not too much, I kind of picked up on what that meant. I think I inferred, based on tone.”

(Int 17, patient)

Some parents felt these omissions adversely affected their consultation and expressed a desire to explore difficult topics that were not broached by clinicians (ie, personal values, quality of life, death).

“Even if [physicians] just said...‘we’d love for you to think about, or we want you to consider what that might mean for you...’ We just encourage parents to consider that, so that when they have harder decisions to make moving forward, they...already have a sense for what those values are.”

(Int 14, patient)

Some parents were not concerned when not directly asked about their values, yet, overall, parents appreciated when clinicians inquired about their goals and values, then tailored options and explanations accordingly.

Making the Intangible Tangible

This theme captures the nebulous, the intangible during decision-making, and acknowledges the inherent uncertainty involved, which ranged from prognostic uncertainty to lack of awareness about physical space and visual understanding. Parents described the importance of making information more concrete. For example, some parents wondered what their baby might look like, and what a NICU even was or looked like:

“...I had really no concept, like, how big is this baby gonna be...I was really scared, when she went in for the C-section, to see the baby afterwards I was really scared because I really had no idea what to expect. Like, is she going to fit in my hand?”

(Int 2, partner)

In-person or virtual tours, images, or pamphlets were helpful to some; however, most did not indicate that a specific visual aid would help make concepts more tangible. Rather, clear and comprehensive explanations, free of jargon and euphemisms, were most commonly cited as helpful. Many parents appreciated when information was presented in incremental stepsor “milestones” to provide a framework to rely on amidst uncertainty surrounding future events and prognosis:

“...The [meetings] where they...ended with.what we’re doing next...a next step, or a next thing we’re waiting to hear back on...was probably the most helpful. Because it gave us a little bit of...a direction, a sense of some awareness of where we were at... a next milestone... [and] made us feel a lot more like we were on a path, rather than we were just really confused or lost.”

(Int 28, patient)

Finding Balance

This theme, finding balance, demonstrates the reported parental need for balance throughout the decision-making process, on many levels, from emotional balance (parents and clinicians) to balance of information (paucity versus overload) and counseling neutrally (eg, positivity/negativity, risks/benefits, mortality/survival, abilities/disabilities). Parents often appreciated detailed information to help with decision-making but simultaneously reported cognitive and emotional overload during consultations, leading to difficulty processing. Finding balance in the amount of information provided, in addition to balancing difficult news with hope, was perceived as important:

“I realize it’s such a hard balance to make sure that the patient is not only informed and aware of those things, but also balance that with... [the physicians are] very hesitant to give hope, especially this early, but emotionally even just finding some way to give support I think is important.”

(Int 3, patient)

Too much information resulted in reported parental distress whereas isolating a few options in the moment and letting parents process and ask questions made it reportedly easier to digest. Although parents understood they needed to hear about potential “bad” outcomes, they did not want negative information repeatedly emphasized. Similarly, they did not want clinicians to give them false hope. One participant reflected:

“... A mixture of trying to be frank, with letting us know the reality of the circumstances, while still trying to—I know hope is interesting being in a context like this, they provided a little bit of hope or comfort, while delivering information that can be pretty shocking.”

(Int 21, patient)

Team Synergism

Communication within and between care teams, as well as with the patient/family, defined here as team synergism, impacted parental trust. Parents reported sometimes being confused about who various team members were; introductions with explanation of roles were perceived as helpful. Disagreements or inconsistencies in information was distressing. There were mixed views on joint-specialty consults between neonatology and maternal–fetal medicine: although generally appreciated, some felt overwhelmed by too much information or too many clinicians present, whereas others appreciated seeing the teams working together.

“It’s...nice to have them in the same setting, where everyone is on the same page...It puts everything in a better perspective and gives a team plan.”

(Int 16, patient)

Another participant commented:

“We were getting the same information over and over again, which, I think is good. It helped me,...especially hearing it from multiple people like, when there were changes in staff and hearing the same thing, the same plan...carrying through.”

(Int 2, partner)

Overall, joint consultation was not seen as essential as long as the teams communicated with each other and maintained consistent messaging.

Discussion

Our study offers unique insight into parents’ experiences with antenatal consultation for anticipated extremely preterm delivery. Parents in this situation often experience significant stress and extreme emotions. Our findings further delineate that stress surrounding decision-making is not necessarily ameliorated following a single consultation. Rather, the experience is ever evolving, forcing parents to constantly recalibrate options. Parents thus describe a need for continuous support, a desire to connect on an individualized, human level and to receive clear, empathetic communication. A personalized, compassionate communication style is essential to engaging parents during the antenatal consultation and building trust,^20,26 a universal theme throughout our interviews.

The parents in this study generally did want to shoulder the responsibility for the final decision, but they also wanted the clinician’s expertise, reassurance, and support throughout the process. This form of shared decision-making reflects the model of relational autonomy which encourages clinicians to focus on their relationship with patients and families, acknowledge emotions, and consider their lived experiences to help facilitate decision-making.^27,28 These findings support existing literature that parents prefer physicians to act in a supportive role in their decision-making^16,18 but are novel regarding the fluid nature of decision-making and the need for on-going affirmation by the medical team.

This overarching need for reassurance, regardless of ultimate parental decisions, is novel in the antenatal counseling literature and builds upon a growing body of work centered on trauma-informed care in medicine. Applied to parental experiences in the NICU, trauma-informed care principles emphasize social connectedness and parental support, provided by friends, family, and/or healthcare staff, which can diminish toxic stress and promote well-being.^29,30

Principles of trauma-informed care also emphasize the importance of parental empowerment and encouragement to take on their role as parents.^29,30 Many participants took solace in clinician affirmation of their decision and/or knowledge that other parents had made a similar decision. These sentiments relate to the ‘good parent’ belief—what parents believe to be the core duties they must fulfill to be a good parent.^19,31–33 Clinician reinforcement of good-parent beliefs may help promote resilience and enable more personalized decision support.^19,31–33 Therefore, counseling clinicians, in addition to incorporating principles of trauma-informed care, should aim to explore good-parent beliefs, ideally before delivery. Assisting parents in fulfilling their vision may help maintain hope, lessen traumatization, and make a nebulous ideal of parenting an extremely preterm infant more tangible.

In addition to defining the parental role, the subtheme of making intangible concepts tangible expands upon existing literature focused on helpful visual aids for antenatal consults.^20,34,35 Parents in this study suggested there are varied ways to make abstract information more concrete. When considering ways in which to share complex information, a wider and more inclusive concept beyond simple pamphlets, such as visual tours and modules, may be beneficial.

Another novel subtheme highlighted the concept of parental perspectives on unspoken clinician assumptions. Although not previously reported in empiric studies, this relates to parental perceptions of clinician bias, language, and message framing that can adversely affect counseling and decision-making. Message framing impacts decisions.²² Clinicians’ practice type, region, and political/religious views are all associated with variations in counseling recommendations; these differences suggest that implicit biases may operate when communicating with and caring for patients.^3,23,36–38 Parents prefer when clinicians elicit, rather than presume to know and understand, their preferences and values. By allowing parents to share their narratives, patient-centered counseling may mitigate the impact of bias.

Finally, the importance of team synergism aligns with professional organizations that recommend communication between the obstetric and neonatal teams prior to meeting with families.³⁹ Although joint counseling is widely recommended when feasible,³⁹ parental perspectives on joint counseling have not been explored previously. Our participants experienced a mix of joint and separate counseling, and although they largely did not view joint counseling as essential, team synergy and communication were crucial, both within and between teams as well as with the family. Although this finding may contradict recommendations regarding joint counseling,³⁹ clinicians should simply ask parents for their preferences, recognizing variation.

What was notably absent from our analysis was strong parental opinion about usage of specific words or terminology during consultations. Instead, parents emphasized the importance of clear, honest, and balanced language, not repeating negative information, providing time to process information, avoiding assumptions about understanding or expectations and communicating a poor prognosis honestly, as parents reported they want to hear this information. This can, however, directly conflict with their reported desire to simultaneously maintain hope and positivity. Clinicians should acknowledge this.

Our findings should be considered in light of several limitations. First, this multicenter study was conducted in a single US state among highly educated, English-proficient persons. Yet, by including both academic and community hospitals, we captured a variety of counseling styles, thus increasing the trustworthiness and potential transferability of our thematic findings. The lower enrollment of partners than anticipated was likely multifactorial, including limited visitation due to coronavirus disease 2019, and therefore we were unable to discern patterns or differences between pregnant persons and partners. Although participants were in general representative of typical populations seen in these study sites per Vermont Oxford Network demographics data, they were overall notably very well educated, with a high proportion of pregnancies resulting from in vitro fertilization, compared with the general population, which may affect results. Selection bias was minimized by approaching all eligible patients. Although possible to approach potential participants after delivery, these patients were less likely to participate, particularly if their baby had passed away. Given small numbers, we were unable to determine differences in responses from those who experienced preterm birth, fetal death, or pregnancy continuation at the time of interviews.

These findings also have implications for further research and educational intervention design to improve clinician counseling practices that better reflect parental preferences and ultimately improve counseling outcomes. Future work is aimed at replicating and further exploring findings via empiric research in different regions and practice settings.

Glossary

Int

Interview

IRB

Institutional review board

NICU

Neonatal intensive care unit