Parent Perspectives on Communication Quality in the Neonatal Intensive Care Unit

Abstract

Background:

Though prior literature has demonstrated that communication in the Neonatal Intensive Care Unit (NICU) needs to be improved, in-depth descriptions of parents’ views of NICU communication are lacking.

Purpose:

We sought (1) to explore parent perceptions of communication in the NICU and (2) to understand parents’ communication needs and preferences.

Methods:

We conducted in-depth semi-structured cognitive interviews utilizing concurrent probes with parents of 10 patients in our urban level IV Neonatal Intensive Care Unit over a period of 4 months (July 2021-October 2021). Interview questions were derived from the Quality of Communication scale. We conducted thematic analysis of interview transcripts modeled after work by Braun and Clarke.

Results:

Four overarching themes were identified: Strengths, Challenges, People, and Coping Strategies. Parents reported a range of communication quality in the NICU. Results revealed that the first 48 hours of NICU hospitalization represent a period of vulnerability and uncertainty for parents. Parents value clear yet hopeful communication about a baby’s clinical status and expected course.

Implications for Practice and Research:

We hope that the concrete findings from this study can both inform practice in the NICU now and influence practice guidelines to include such components as emphasis on the first 48 hours, desire for proactive information sharing, and the importance of including hope.

Poor-quality communication between clinicians and parents in the Neonatal Intensive Care Unit (NICU) causes frustration, dissatisfaction, and is a threat to high-quality care.^1,2 Many NICU parents are dissatisfied with key aspects of communication quality in the NICU.³ Increasing numbers of non-English speaking parents as well as reports of structural racism and implicit bias experienced by parents of color can make communication in the NICU even more challenging.^4,5 Parents in the NICU often face unexpected crisis and are subject to decreased parental confidence and altered attachment.⁶ Parents find themselves relinquishing control, altering plans, and reshaping aspirations for the future.^7,8 Given these factors, and the potential for decisions made in the NICU to have long-lasting implications, the NICU can be a uniquely challenging environment for communication. Bedside communication is important, impacting parental understanding, well-being, and bonding.² In addition, effective and timely communication is essential for the delivery of optimal medical care.⁹

In the NICU, communication occurs continually between parents and the healthcare team as information is exchanged, questions are answered, and decisions are made throughout the hospitalization. Healthcare team members play varying roles in the communication process with parents.^10,11 Neonatologists provide information regarding an infant’s medical condition, prognosis, and treatment options, and explain complex medical terms and procedures,¹⁰ while nurses, who are most often at the bedside, teach and encourage parents to interact with their infant, provide updates on the baby’s progress, and offer emotional support.^11,12 Gaps remain between how healthcare providers communicate with parents and how best practice guidelines suggest that they should communicate.⁹ It is perhaps not surprising then that there is a disconnect between what NICU providers and parents understand about a given patient, likely reflecting inadequate communication.¹³ Better communication results in less stress for parents and improved development of attachment, which may lead to better outcomes for babies.¹⁴ Poor communication results in feelings of isolation and abandonment.²

Given the importance of communication quality in the NICU and its impact on parent- and newborn-related outcomes, we sought to explore parents’ perceptions of communication in the NICU. We aimed to elicit descriptions of both perceived good and bad communication in the NICU as a first step toward future work aimed at improving the quality of communication between the healthcare team and parents. We also sought to understand parents’ communication needs and preferences. The current study provides insight into a little explored topic in order to improve parents’ experiences of NICU hospitalization.

METHODS

We conducted in-depth semi-structured cognitive interviews utilizing concurrent probes with a convenience sample of parents of 10 neonates hospitalized in our NICU over a period of 4 months (July 2021-October 2021).¹⁵ We used purposive sampling to ensure equal groups of term and preterm newborns. We did not analyze data separately by group. Parents consented and enrolled on day of life 10–14 and were either interviewed alone or with their spouse.

We derived interview questions from the Quality of Communication scale with permission from J. R and all Curtis.¹⁶ The Quality of Communication scale was designed for use with seriously ill adults and/or their surrogates and consists of 2 subscales, “general communication skills” and “communication about end-of-life care.”¹⁷ Because this measure was originally designed to evaluate quality of communication with seriously ill adult patients, we modified questions for the NICU setting. Modifications were comparable with those made in similar studies to adapt a tool designed for use with adult patients to pediatric contexts.¹⁸ For example, a probe asking how good the doctor is at “answering all your questions about your illness”¹⁶ became “answering all your questions about your baby’s illness.” As part of the interviews described here, we evaluated questions for item comprehension and the response process (comprehension of question intent, meaning of terms, ability to recall information, motivation, and sensitivity/social desirability). Based on this, we were able to establish face validity and reframe questions as needed in real time. Questions about end of life were not relevant for some neonates. We chose this measure as it is a gold standard for measure of communication quality. Level of respiratory support required, parent reported race, and gestational age at birth were collected at the time of the interview. Interviews were conducted by a neonatologist with training in qualitative methods. Interviews were analyzed using thematic analysis, modeled after work by Braun and Clarke.¹⁹ Two authors (KG, GR) reviewed, qualified, and coded responses independently to identify themes. Themes were then revised, refined, and categorized. Concordance among all authors was reached by consensus. This study was conducted in accord with prevailing ethical principles and was approved by the Mount Sinai Hospital Institutional Review Board. Parents provided informed consent for participation.

RESULTS

Overview

This study was conducted in our 50-bed level IV NICU in an Urban Academic Hospital with approximately 7500 deliveries per year. A total of 14 parents (8 mothers and 6 fathers) of 10 individual neonates enrolled in our study and completed semi-structured interviews. Gestational ages of enrolled neonates ranged from 26 + 4 to 39 + 4. Five patients did not require respiratory support and 5 patients were on at least 3 L high flow nasal cannula. Parent reported races included white (11), black (1), Southeast Asian (1), and Middle Eastern/white (1). Given our small sample size and in order to protect participant confidentiality, we did not collect additional demographic information. Following thematic analysis, 4 overarching themes were identified: Strengths, Challenges, People, and Coping Strategies (Table 1 and Table 2).

TABLE 1.

Strengths and Challenges

Strengths
Clear explanations	“I think our doctor has done a really good job of taking breaks and explaining to us or summarizing atthe end, if we’re still unclear.” (6)	“Everyone has been really great at explaining things in detail. If they’re not, like if I’m not understanding something, they’ll dumb it down.” (10)
Provider engagement	“The doctors have been great. I mean really present and they stuck around a long time. We have a ton of questions.” (4)	“I have felt that people are really attentive to us and that you know we’re getting someone like 100% focused when we’re talking to them.” (6)
Humanizing experiences	“I’ve appreciated the ones who have learned her name and I know she’s in the system as baby girl, but I tell everybody her name when I meet them … and just sort of try to relate on a human level.” (4)	“People go out of their way to make sure we’re involved in yeah.” (9)
Proactive information sharing	“When the pediatric fellow … saw us … she came back. She made a point of coming over and checking in after the surgery and … she could have just as easily pretended to like look at her cell phone and keep going.” (5)	“But they’re all really good at answering questions and prompting, do you have any more questions? They never just cut you off or anything like that.” (7)
Challenges
Lack of or poor explanation	“Very little communication, very little clarity.” (2)	“We had zero information except for my husband coming up here and asking questions, but there was no information that was proactively given.” (1)
Unfamiliar language	“So, in the beginning it took us a day or two to get to the common language, but by now I think they understand us and we understand that.” (8)	“The information I was getting was pretty high level and using medical terminology that I then … looked up myself so I donť know that everybody kind of understands what creatinine levels are.” (1)
Ups and downs & uncertainty	“So it all sounds positive, but then obviously in my head I’m like I think I prepared myself for not a linear journey, but like a very up and down journey and so I’m always kind of on edge.” (1)	“Everything was fine and then … So I mean, thank God, it hasnť been that way, but like stored in the back of our minds we’re just like waiting …” (3)

TABLE 2.

People and Coping Strategies

People
Nurses	“The nurses have been more like my people. And I know that they basically have all the information and they can coordinate getting the doctors involved.” (4)	“And the nurses too have been great, like I’ve had some moments where I’ve had kind of like little breakdowns, and you know, I think people have let me kind of let me talk and express how I’m feeling and listened.” (6)
Doctors	“And right now I’m not really 100% clear who that person would be. And then also there’s, maybe talk to him, but it’s like, oh iťs Friday and she’s not on ...” (5)	“So, so I don’t see the doctors as much with the baby … definitely the nurses. They definitely do. You know, if he’s crying like try to calm him down.” (3)
Point person	“One of the tricky challenges of hospital care is seeing a rotating cast of characters … and we still don’t feel like we have one person who just like knows our baby really well.” (4)	“Like from head to tail like who’s the one person communicating? And I don’t know …” (5)
Parents	“It has felt like most of the communication is directed at me and you know, I’m the first point of contact … the NICU calls me.” (1)	“[We] want to hear the same information at the same time so that I’m not playing translator, and I’m not using my memory.” (7)
Coping strategies
Prior experience	“We probably worry a little more than most ‘cause our daughter was also premature .. she had a lot of ups and downs.” (3)	“We understand it ‘cause, we’ve had family go through stuff, but I know some people probably may have never had to, so they think it’s going routine.” (9)
Other resources	“And then I separately got more context and then I got and then, then my parents spoke to like 10 neonatologists and I got more information.” (1)	“He had one issue which … if you Google it, it’s like this could be a sign of like terrible stuff … my wife was really nervous yesterday.” (3)
Focus on positive	“I’d rather have them focus on what’s here and what’s happening now then what may happen in the worst case scenario.” (8)	“Yeah, like for me, I’d honestly, yeah, I’d probably prefer for, uhm, you too be positive, yeah, yeah.” (10)

Strengths

Parents identified a number of positive aspects of communication in the NICU which were categorized into 4 sub-themes: (1) Clear explanations; (2) Provider engagement; (3) Humanizing experiences; and (4) Proactive Information sharing (Table 1). Parents referenced provider transparency, use of understandable language, and willingness to take time to ensure clarity. Parents describe physicians being engaged, present, and attentive during conversations, noting “you know we’re getting someone like 100% focused when we’re talking to them” (interview 6). Parents described aspects of communication in the NICU as humanizing, stating that they felt heard and included. Parents also commonly spoke positively about proactive communication sharing. This included physicians going out of their way to provide information and returning to answer questions and check in with families. For example, “when the pediatric fellow who was in the room when she was born just saw us wandered past, recognized us despite the mask and all that ... she came back. She made a point of coming over and checking in after the surgery and it was like you know, she could have just as easily pretended to like look at her cell phone and keep going” (interview 5).

Challenges

Parents described significant communication challenges that they encountered during their infants’ NICU stay. Though a small number of parents described only positive experiences with communication, most parents described both communication strengths and challenges. Challenges were divided into the following sub-themes: (1) Lack of explanation or poor explanation; (2) Unfamiliar language; and (3) Ups and downs and uncertainty (Table 1). Parents described periods of poor information sharing during which they felt confused and frustrated. This was particularly common in the first 24–48 hours of a baby’s NICU course. For example, “the first day . . . we had zero information” and “I did ask for someone to come down, for the doctor to come and speak to me . . . no one came” (interview 1). Parents described confusing explanations and lack of communication from physicians, though in many cases this improved over time. Parents discussed needing to “learn a new language.” The challenge of coping with frequent ups and downs and overall uncertainty was a recurring theme. Parents described worrying about unstated problems as well as processing “what-ifs.” In several cases of infants who were generally well with no reason to expect mortality, parents referenced an on-going fear that their baby might not survive, potentially suggesting poor communication. This fear was most common early in an infant’s hospitalization and came up even for parents of infants who were expected to survive with a good outcome. Though not explicitly referenced as a challenge, parents in general described communication as relatively one-directional, with clinicians providing information and parents receiving it. For example, “They [physicians] come in and explain. Yeah, this is the pros to this situation, this is the cons” (interview 9). Parents also described having to ask questions to receive information. One parent said, “I think I asked a lot of questions myself versus a lot of information being given to me” (interview 1). Several parents endorsed a desire for more proactive, reassuring communication early in their infant’s NICU stay.

People

Parents described interactions with staff as well as other topics relating to individuals. Four sub-themes emerged: (1) Doctors; (2) Nurses; (3) Point person; and (4) Parents (Table 2). Parents described generally positive communication experiences with nursing staff. This was sometimes contrasted with negative experiences with physicians. Some parents attributed less favorable encounters with physicians to role differences, for example: “from the nurses I felt so much care and compassion than from the [physicians] . . . I try to join the when the attendings are rounding. It’s different, obviously, because they’re doing their job, but there’s, it’s still the information” (interview 1). Parents described the challenge of not knowing which physician was their “point person, ”especially early in the hospitalization. For some parents, this improved with time and their perspective on communication in the NICU improved once they’d identified their “point person” for information and decision-making. Parents noted that this was especially challenging due to frequently changing staff. There were very few references to nurse practitioners in participant responses. One parent noted, “I hadn’t actually spoken to the doctor. . . I’ve spoken with the NP a couple of times and with the nurses obviously every day” (interview 1). Several mothers discussed feeling that they were typically the parent to whom most information was directed, which was not always desired. Participants endorsed wanting both parents to be included in receiving updates from NICU staff.

Coping Strategies

Parents utilized several strategies to cope during their baby’s NICU admission: (1) Prior experiences; (2) Other resources; and (3) focus on the positive (Table 2). Many parents referenced their prior experiences in the hospital when processing the communication they received in the NICU. In some cases, parents felt that prior experience enabled them to advocate better for their babies. One parent said, “And so we said very clearly we’ve done this before. This was what happened . . . and we think it could happen again and we just want to be very conservative” (interview 4). Other parents felt that prior experiences made them worry more than they otherwise might, “we probably worry a little more than most ‘cause our daughter was also premature . . . she was (born at) 28 (weeks GA)” (interview3). Some parents felt that their previous experience equipped them with an enhanced ability to understand what was happening or what might happen, or an increased comfort with medical jargon that they felt was needed to process poor communication, “our son was in the NICU with something similar last time . . . so when we came in this time . . . we felt like we knew more than certainly than our doctors last time even knew just ‘cause we’ve been through the experience” (interview 4).

Multiple parents described accessing additional resources to understand what was happening to their baby. This often took the form of asking family members or friends with medical backgrounds to help explain a baby’s course or to help think through challenges. Some parents used non-medical NICU staff members, such as social workers, to help them access physicians or to help them navigate the flow of information when communication was poor. Parents spoke about searching the internet to get information. When describing their preferences for information sharing, many parents referenced a desire or choice to focus on the positive as a way to help them process information being shared with them. Many parents did not want to explore worst case scenarios but preferred to focus on “what’s here and what’s happening now” with an emphasis on information which provides hope.

DISCUSSION

We present here the results of a qualitative study exploring parents’ perceptions of communication in the NICU. We found that parents reported a range of communication quality in the NICU that was influenced by the relationships that they developed with staff and modulated by a variety of coping strategies. Our results point to key aspects of communication in the NICU which present opportunities for improvement as well as starting points for future work.

Parent descriptions of high-quality communication in the NICU are consistent with the NICU communication framework in which clear and timely explanations contribute to success in information sharing.^2,14 Descriptions of communication challenges also add important context. Parents in our cohort cited the first 24–48 hours as particularly chaotic with poor communication being frequent and problematic. Parents described not understanding what was happening, not knowing who to ask for information, and wanting a clearly identified point-person. Prior work has established the importance of early communication in the NICU, and published quality improvement projects have focused on improving such early communication.^20–23 Timely information sharing is important, especially at key moments early in a baby’s hospitalization. When communication is poor in the first 24–48 hours, trust may be eroded. Teams must work to improve and rebuild trust when communication challenges emerge early.

Our findings add to prior work which has demonstrated that failure to explain unfamiliar language or concepts is both common and challenging for patients and families.²⁴ Participants described relying on outside resources such as family, friends, and the internet to help them process and understand information that was not well communicated. Though there is undoubtedly value to using such resources, they are also potentially problematic.²⁵ Internet sources may be inaccurate or inappropriately applied out of context. Well-meaning family and friends may not have adequate expertise to process and explain the complexities of a baby’s NICU course. Reliance on such resources may indicate room for improved communication with the NICU team or lack of trust in NICU providers. Teams might consider providing a list of reliable resources to parents wishing for written material to supplement verbal communication.

Mothers in our cohort often stated that they were more likely to receive communication from the team than was their baby’s father, while fathers in our cohort did not comment on this. The finding that mothers might be more likely to receive communication from the NICU is consistent with prior work that describes fathers as sometimes being seen as peripheral in the NICU.²⁶ It may also reveal bias in relation to parenting roles. It is important that clinicians consider ways to include both parents in communication as communication in the NICU has been directly connected with parental well-being.²⁷ Fathers may have different communication needs than mothers and view direct communication as a way to avoid misinterpretation.²⁷ In order to communicate in accordance with the parents’ wishes, there is likely benefit to having a discussion early on in order to determine if parents prefer for clinicians to communicate primarily with mother, father, or both together.

Participants in our study referenced the influence of prior experiences either with medical care or in the NICU specifically on their current perceptions of and needs relating to communication in the NICU. Given that this was commonly cited by our participants, providers may wish to ask new NICU parents about their prior experiences either in the NICU or with serious illness more broadly. Future work should explore how providers can better communicate with parents by asking about their prior experiences with serious illness. Such discussion is 1 component of an improved approach to communication and shared decision-making in the NICU. Best practices, as illustrated in a framework designed by Wreesmann and colleagues, suggest that clinicians should focus on (1) building relationships, (2) exchanging information, (3) sharing decision-making, and (4) enabling self-management.¹⁴ Though parents in our cohort often described communication in one direction, from clinicians to parents, this framework emphasizes the importance of information exchange that is bi-directional.

Parents describe a desire for clear, direct communication that is timely and allows room for hope.²⁸ Clinicians need to be cognizant of the language they use and ensure adequate provision of information.^13,28,29 Prior work has also demonstrated the importance of imparting hope for seriously ill patients in any context, and especially in pediatrics.^30,31 Such hopeful communication can be used even in the context of “bad news.” Providers can, for example, share both hope and worry with a family when a baby is seriously ill, or they can explore hope for short-term comfort, even if long-term survival is not likely. Clinicians also need to balance hope with honest, direct, information that avoids “understating severity.”²⁸ Preferences surrounding hope should influence providers’ approaches to communication with NICU families.

Parents in our cohort described nurses as compassionate and accessible. Descriptions of communication with nurse practitioners were much less common. This may be in part due to lack of parental awareness of the nurse practitioner role, with parents often confusing nurse practitioners for physicians in our unit. Nurses and neonatal nurse practitioners can contribute to improved communication in the NICU in several important ways. First, nurses play a key role in providing emotional support to NICU parents which itself is central to quality of communication.^11,12,27 By focusing on such support, nurses can improve communication with families by encouraging parents to ask questions, share their observations, and participate in decision-making regarding their infant’s treatment plan. Nurses may further help to enhance the communication skills of their colleagues by modeling respectful communication with patients, families, and other healthcare team members. Increasingly, communication skills training is being implemented across professional disciplines within the NICU.³² Nurses can seek out such training to ground their own communication skills in best practices. As advocates for patients and families, nurses play an essential role in both participating in high-quality communication exchanges and enhancing the communication quality of colleagues resulting in improved teamwork, patient care, and overall outcomes within healthcare settings.²⁷

Strengths and Limitations

This study has several important strengths. This was a qualitative study which captured the perspectives of both fathers and mothers to describe experiences of communication in the NICU. A modified gold-standard measure of communication quality was used to collect parent perceptions related both to positive and negative experiences with communication in the NICU. NICU patients representing a range of gestational ages and respiratory support requirements were included. This study also had limitations. This was a single-center study. Therefore, we cannot conclude generalizability based on our findings. As with any interview study, there is a risk of social desirability bias which may have influenced parents’ responses. Because only parent perspectives are represented here we cannot know the perspectives of the physicians involved nor do we know if parent and physician perspectives were concordant. The interviewer is a physician, which may have both biased questions and responses. To enroll in this study, parents had to be present at their baby’s bedside. Such parents may differ from parents who are not able to visit their babies. Non-English speakers were excluded from this study. Lack of English fluency introduces a significant number of additional communication challenges which therefore were not explored as part of this study. Most parents in this cohort were white. The experience of racially marginalized parents may be meaningfully different. This study was designed to capture communication that occurred within the first 10–14 days of a baby’s hospitalization. Communication occurring during other time intervals may be different. Finally, we do not have information about each infant’s diagnosis, which may be important for contextualizing communication quality.

Practice Implications and Conclusions

We hope that our key findings will frame efforts at improving communication in the NICU and inform future research. First, the first 48 hours of NICU hospitalization represent a period of vulnerability and uncertainty for parents and may be an especially important timeframe to target for improvement. Clear communication, especially during this time, about a baby’s status and expected course and about who on the team can be viewed as the “point person” is essential. Providers should be transparent about the use of outside resources so that parents feel comfortable asking questions about additional information they may receive from such resources as well as pinpoint any communication gaps. Finally, parents value information that is clear and hopeful and providers should therefore look for opportunities to amplify hope. Effective communication in the NICU involves collaboration amongst the entire healthcare team. Parents should feel comfortable seeking information and support from neonatologists and nurses, as well as other staff who have important information to provide. Communication should be culturally sensitive and tailored to the individual needs and preferences of the parents and the medical needs of the infant. We anticipate that healthcare providers can use our findings to improve communication in the NICU.

What This Study Adds.

• This article describes a qualitative study exploring parent perspectives on communication in the NICU.

• The first 48 hours of NICU hospitalization represent a period of vulnerability and uncertainty for parents and may be an especially important timeframe to target for improvement.

• Parents value hopeful, proactive communication that begins early in a patient’s hospital course.

Summary of Recommendations for Practice and Research.

What we know:

• Poor quality communication in the Neonatal Intensive Care Unit (NICU) causes frustration, dissatisfaction, and is a threat to high-quality care.

• Prior work has demonstrated that many NICU parents are dissatisfied with the quality and quantity of communication they receive in the NICU.

• Parents value hopeful, proactive communication, especially early in their baby’s hospital stay.

What needs to be studied:

• Parent perceptions of communication in the NICU.

• Parents’ communication needs and preferences.

• The impact of improved communication on parent and patient psychosocial outcomes.

What we can do today:

• Focus on high quality communication, especially in the first 48 hours of NICU admission.

• Share information proactively.

• Incorporate hope into information sharing.

• Communication should be culturally sensitive and tailored to the individual needs and preferences of the parents and the medical needs of the infant.