Abstract
Abbreviation
Intraventricular Hemorrhage
Neonatal Intensive Care Unit
Introduction
Obstetricians request neonatal consultations when the risk of preterm delivery is high so that the neonatal practitioner can prepare parents for a preterm child [1–3]. Parents are commonly shocked to hear that their baby may be born prematurely and need the neonatal intensive care unit (NICU) [2, 3]. Studies evaluating antenatal consults have shown parents and physicians recall the content of these discussions very differently [4]. The experience is associated with anxiety, and interviewed parents tell us that information can be overwhelming and not well understood [2, 4–7, 2, 4–7].
In order to understand routine antenatal counseling for premature delivery, our goal was to determine what information neonatal practitioners deliver to parents, what parents ask and express during the consultation, and the overall satisfaction of both neonatal practitioners and parents.
Methods
This was a prospective observational study at a single tertiary care center of antenatal consultations by neonatal practitioners regarding possible premature delivery. Prior to recruitment, the University of California San Diego Institutional Review Board approved the study design. Written informed consent was obtained from all participants.
Participants
Expectant Parents: Pregnant women between 24 0/7 to 31 6/7 weeks gestation were eligible if they were admitted patients, at risk for delivering prematurely, and had a request from the obstetrical team for an antenatal consultation. If present for the antenatal consultation, co-parents (male or female) were also eligible. EMS or the consulting neonatal practitioner approached eligible parents for participation at all times of the day.
Neonatal Practitioners: Neonatologists, neonatal fellows, and neonatal nurse practitioners that routinely provide antenatal consultations for prematurity were eligible. EMS approached all neonatal practitioners for participation individually.
Exclusion Criteria: Pregnant women were excluded for the following reasons: gestation below 24 weeks to avoid discussions focusing on the option of comfort care at birth, prenatally suspected severe anomalies or chromosomal abnormalities, a prior consultation by a neonatal practitioner had already been done during that pregnancy, primary language other than English or Spanish, or Spanish speaking only without medical translator available at the time of the consultation. EMS and KLM were excluded from participating as neonatal consultants.
Study design
Audio-recording: Neonatal practitioners were instructed to record the entire consultation with a Sony MP3 IC Recorder (ICD-SX57, Tokyo, Japan) and stop the recording at the end of the consultation. No guidelines were given on how to perform the consultation.
Transcription and Coding: EMS and KLM transcribed audio-recordings and qualitatively analyzed transcriptions for thematic content. Using thematic content analysis, through multiple reviews of the transcripts, we distilled a list of common meaning units and combined categories into themes. EMS and KLM resolved discrepancies through repeated discussion. We also determined the consultation duration and overall word count for both neonatal practitioners and parents.
Survey: Within 48 hours, we asked parents and neonatal practitioners to complete a survey regarding: demographics, pregnancy, and the antenatal consultation. Answer options were yes/no, 10-point Likert Scale, and open response. We designed parent and neonatal practitioner surveys to have complementary questions. As no standardized or validated paired survey existed, each survey was created for this project (Tables 1 and 2).
Analysis
We used descriptive statistics including mean, median, standard deviation, and range for continuous variables. We used linear regression models to evaluate relationships between demographics, audio-recording information, and survey data. Transcripts and open response answers from surveys were evaluated for emerging themes using a thematic content analysis.
Results
The study was conducted February – April 2013. There were 28 antenatal consultations requested by the obstetric team.
Participants
Expected parents: Twenty-four pregnant women were approached, and 17 were enrolled along with 5 partners (four male, one female). Three pregnant women refused participation and four were excluded (due to language or prior consult during that pregnancy). Women were 25 to 31 weeks pregnant, median 28 weeks. Parents were mostly Caucasian and well educated (Table 3).
Neonatal practitioners: Three nurse practitioners and five neonatal fellows consented to participate but only four neonatal fellows (one first year, two second years, and one third year) had conversations audiotaped.
Audio recordings
There were 17 recorded antenatal consultations for prematurity. The mean duration was 24.2 minutes (median 20.4, range 9.3–56.7). Length of consultations was not statistically associated with lower gestational age (Fig. 1). Based on word count, neonatal practitioners generated on average 72% of the discussion [range 56–90% ].
What neonatal practitioners said:
Neonatal practitioners most frequently discussed immediate newborn care: antenatal steroids, intubation, nutrition, and length of NICU stay (Table 4). Neither physicians nor parents initiated a discussion about allowing natural death at the time of birth (i.e. comfort care). One physician briefly mentioned withdrawal of life sustaining treatment for a patient with “a really bad brain bleed.” No other consultations discussed withdrawal of life sustaining treatment. Physicians discussed survival in nine of 17 consultations.
What neonatal practitioners asked:
Neonatal practitioners asked parents about prior prematurity knowledge in 14/17 consultations and asked parents if they had questions in 15/17 consultations. Physicians rarely asked parents about their greatest fears (5/17), values for medical decision-making (2/17), or hopes or goals for the pregnancy or infant (2/17).
What parents said:
Often without being asked, parents volunteered their hopes or goals in 14/17 and fears in 13/17 consultations. Parents hoped their baby would not need to be born prematurely:
“I just want to make sure she stays in there as long as possible. Mother, 30 weeks.”
“It‘s just that we‘re hoping this will all be sort of a hypothetical discussion … Like I said before, hopefully only just a warning… But this information helps. Thanks so much for the information. It really does help. Hopefully we won’t be encountering you at this point. But thank you for the time to explain it all. It really is much appreciated… so hopefully it won’t come to that and if it does it will be fine. Father, 31 weeks.”
“And hopefully I can keep her in there for another couple more weeks. I can get her fully developed before we have her. So I‘m just scared for her and her developmental process. Mother, 27 weeks.”
Parents were worried about survival and development:
“We can keep anyone alive nowadays. And then sometimes I question the resources and time … some kids go through because we have … all this technology … Of course I think that they’re my kids so I have a different feeling … I think there is a quality of life. And most [kids] have great quality of life even though they have disabilities. But some I don’t think do. Mother 28 weeks.”
“I guess my biggest concern is that my baby is going to be healthy … That she’s going to be developed enough to live a happy full life. Be normal. Mother, 27 weeks.”
What parents asked:
Parents asked a wide range of questions in 16 of 17 discussions (mean 16, median 11, range 0–61). The number of parental questions was not statistically associated with gestational age, parental education, or prior pregnancy loss (Fig. 2). The number one question (12/17 consultations) was about timing of discharge (Table 5). The second most frequently asked question (10/17 consultations) involved how the infant would be fed: “If the baby was in the NICU … I have nursed all of my kids, how would I do that?” Mother, 31 weeks.
Parents asked questions about when they would be able to hold/touch/see their child and visit their baby after the mother was discharged:
“But I won‘t be able to hold him? He has to go to the NICU right away? Mother, 31 weeks.”
“When we get to see them for the first time, do we get to touch them or just look at them? Mother, 28 weeks.”
Some parents asked general questions like “Will he be alright?” or “What are the risks of prematurity?” without asking for survival statistics. In four of 17 consultations, parents explicitly asked for likelihood of survival: “Like survival rate, and like what are the biggest risks for his arrival, like what are the chances that he will have brain problems or lung problems?” Mother, 26 weeks.
Parents with prior preterm infants:
Not surprisingly, the parents who had among the fewest questions [range 0–10] and shortest consultations were those with a previous preterm child (born 31–34 weeks). This association approached but did not reach statistical significance in a linear regression model. The mother with the shortest consultation of only 9.33 minutes was 26 weeks into her current pregnancy. When surveyed about her greatest fear, she responded: “None. Because I have had experience with the NICU … I realize the risks and know that you will do all that you can to take care of my baby.” Mother, 26 weeks.
Surveys
Parent surveys: Sixteen pregnant women and five co-parents returned post-consultation surveys. All were returned by 12 hours. One mother did not complete a survey. Nearly all parents (20/21) felt the neonatal practitioner spent enough time with them. We asked parents to rate how knowledgeable they were about having a premature baby both before and after the consult. The mean change in knowledge was an increase of 3.7 points (Fig. 3). When asked to rate how well the discussion was tailored to their needs, parents gave an average score of 9.2 (SD 1).
We asked parents, “During your NICU consult, what was your greatest concern?” Disability was the most frequently expressed greatest concern (Table 6). Nearly one quarter of parents told us their greatest concern involved survival. For two parents in this group, we found that survival was not discussed during their consultation. Nearly one quarter of parents reported their greatest fear involved being separated from their baby. Some parents reported more than one “greatest concern.”
We asked, “What do you specifically remember about the NICU consult?” Many parents reported characteristics of the neonatal practitioners: “The consultant was professional, warm, engaging, and obviously concerned about me, my questions and providing the information I needed ... ” “That he sat by the bed very attentive and felt he was to my level.” “Statistics, laughing, knowing I was getting the knowledge I wanted but trying to do the best with it I could. Her being very open, loving, calm and sweet, and knowledgeable, thinking my baby has a good chance if people like her are involved.”
We asked, “What can we do to improve our counseling?”
Parents suggested: “Maybe an FAQ” – frequently asked questions handout “Photos or Video called, ‘Our preemie’ [with information] based on weeks’ gestation” “Perhaps provide some literature to leave with parents. It was a lot of information” “It was hard to think of questions that I should ask until it was over. Maybe have the most popular questions addressed at the beginning of the meeting.” “Maybe wait until the initial shock of the situation has been able to register and we can form more questions and concerns to talk about. I guess that depends on each person.” “Provide more information to terrified parents who don’t have presence of mind to ask questions on spot.” “Making sure both parents attend consult.”
Neonatal practitioner surveys:
Neonatal practitioners completed 17 surveys. They felt they spent enough time in all consultations but also felt they provided limited detail about prematurity (Fig. 4). They expressed uncertainty about what and how much information to provide: “Parents didn’t have a lot of questions … I hope that I didn’t give them too little information.” “I’m not sure if the parents wanted all the information I gave them.” “Discussed intraventricular hemorrhage … but also did not want to worry her unless delivery was imminent.”
Neonatal practitioners were also concerned that the mother’s needs might not have been met: “Maybe I should have asked her more about her [in-utero fetal demise] … I don’t think I delved enough into her emotions.” “I sensed that she was overwhelmed and really wanted her husband to be there.”
Satisfaction: In a 10-point Likert Scale, parents rated overall satisfaction as 8.9 (mean, SD 1.2). Neonatal practitioner satisfaction was 4.8 (mean, SD 1.4). We did not find any factors associated with satisfaction using linear regression.
Discussion
Our study adds to previous work that concludes what matters most to parents may not be what physicians discuss [8]. We learned that physicians focus primarily on the immediate issues: the details of resuscitation and initial neonatal care. However, parents are worried about more global issues and will not always volunteer their fears or questions. Because of our findings, we recommend that practitioners ask parents if they want to know about common fears and worries such as survival and developmental outcomes. Instead of having an agenda or following a checklist [9, 10], we address parental concerns and questions at the beginning of the consultation to tailor our communication. We conclude that neonatal consultants need to elicit the amount and type of medical information that parents want.
Our study supports other work, which recommend that communication includes “individualized decision-making” and a “realistic nonbiased approach” [11, 12]. Janvier, Lorenz, and Lantos argue against: “presumptively telling parents every fact that we think might be relevant … Instead, doctors should try to discern what parents want and need and to adapt counseling to those needs” [13]. Indeed, interviewed parents stress the importance of knowing their perspective and supporting them with good data and humanity [1, 15]. Since our study, when parents seem unsure what to ask, we now volunteer that common questions parents ask are: 1) When will my baby come home? 2) How will you feed my baby? 3) When can I hold my baby?
We found that parents reported high satisfaction scores despite variation in consultation length and content. By survey, parents specifically recalled positive neonatal practitioner characteristics. Our parental satisfaction likely reflects perceived compassion and empathy. In our study and others [15, 16], parents described compassion and sensitivity as critical components of the consultation.
We found that physicians rated their overall satisfaction less favorably than parents did. Providing too much or too little information to families was a repeated physician concern. Physician dissatisfaction and discomfort with parent communication is consistent with a recent survey that showed 43% of trainee neonatologists indicated a need for training, practice and strategies in the area of breaking bad news [17]. Our results could be used to improve training of neonatal fellows to better assess parents’ needs, to tailor their consultation to meet those specific needs, and to increase physicianconfidence [7].
Limitations
This was a small sample of seventeen consultations by four neonatal fellows at various points in training. The time of year determined which neonatal practitioners were on service or available to do antenatal consultations and therefore which were enrolled in the study. We acknowledge that the act of recording these discussions likely influenced the neonatal fellows to be more conscious of what they said and how they spoke, known as the Hawthorne effect. This effect may have decreased physician scores because it led them to be more self-critical and conversely may have increased parental satisfaction scores because of improved communication. Because all of the conversations in this study were audio-recorded, this observer effect may have affected the results in this study. Language barriers increased the homogeneity of our study participants. The consultation styles of training physicians may be different from that of attending neonatologists. A larger study might determine variation by level ofexperience.
Disclosure statements
This was an unfunded project. The authors declare no potential or actual interests relevant to the topics discussed in this manuscript. This research was conducted in accordance with the ethical standards of all applicable national and institutional committees and the World Medical Association’s Helsinki Declaration.
Footnotes
Acknowledgments
We thank the parents and neonatal fellows who shared their stories and time to help us better communicate.