BACKGROUND: Families must process complex information related to neonatal encephalopathy and therapeutic hypothermia.
METHODS: In this mixed methods study, semi-structured interviews were performed with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014.
RESULTS: Thematic saturation was achieved after 20 interviews. Parental experience of communicating with clinicians was characterized by 3 principle themes. Theme 1 highlighted that a fragmented communication process mirrored the chaotic maternal and neonatal course. Parents often received key information about neonatal encephalopathy and therapeutic hypothermia from maternal clinicians. Infant medical information was often given to 1 family member (60%), who felt burdened by the responsibility to relay that information to others. Families universally valued the role of the bedside nurse, who was perceived as the primary source of communication for most (75%) families. Theme 2 encompassed the challenges of discussing the complex therapy of therapeutic hypothermia: families appreciated clinicians who used lay language and provided written material, and they often felt overwhelmed by technical information that made it hard to understand the “big picture” of their infant’s medical course. Theme 3 involved the uncertain prognosis after neonatal encephalopathy. Parents appreciated specific expectations about their infant’s long-term development, and experienced long-term distress about prognostic uncertainty.
CONCLUSIONS: Communicating complex and large volumes of information in the midst of perinatal crisis presents inherent challenges for both clinicians and families. We identified an actionable set of communication challenges that can be addressed with targeted interventions.
- TH —
- therapeutic hypothermia
What’s Known on This Subject:
Neonatal encephalopathy is complex and associated with significant morbidity and mortality; parents’ experience of communicating with clinicians in this condition has not been well described.
What This Study Adds:
Parents of encephalopathic infants reported fragmented communication, difficulty organizing information, and long-term stress due to their infant's uncertain prognosis. Targeted communication interventions should help parents organize information, emphasize the big picture, and prepare families for ongoing prognostic uncertainty.
“It’s so much more than just having a traumatic birth. It’s the death of the dream of imagining yourself giving birth and holding your baby with your husband there. It’s this magical moment that you think about forever. Whereas…it soon becomes a trauma situation.”
Therapeutic hypothermia (TH) is the only brain-specific treatment of neonatal encephalopathy. Despite the benefit of TH for many infants, nearly one-half of treated patients die or survive with significant disability.1–4 The decision to initiate TH must be made within 6 hours of birth and often results in neonatal transfer to a referral center distant from the parents.
Initial conversations about neonatal encephalopathy and TH generally occur in the midst of a crisis. Parents are unprepared for a medical emergency or complex medical decision-making. Data suggest that parents can experience depression and anxiety in the face of their infant’s critical illness5–7; as many as one-quarter of mothers of high-risk infants can go on to have posttraumatic stress symptoms.8 Importantly, the way that clinicians interact and communicate with parents can mediate both short- and long-term emotional trauma.9,10
The goal of the present study was to characterize the parental experience of communicating with clinicians about TH and neonatal encephalopathy. We chose to explore this complex topic by using a qualitative methodology in which recruitment continues until no additional thematic content emerges.11,12 Our goal was to identify communication patterns that helped or hindered parents’ ability to hear important medical information and process the possibility that their infant could die or survive with serious disability. Isolating communication patterns can inform communication interventions for this population.
Participants and Design
This mixed methods study was conducted at an urban referral Level IV NICU. Care for asphyxiated infants in our NICU includes a standardized 72-hour TH protocol involving frequent blood samples, continuous amplitude-integrated or video electroencephalographic monitoring, 2 head ultrasounds, and 1 MRI after TH. Infants with multiorgan dysfunction receive additional, individualized interventions.
From an existing longitudinal cohort, the study recruited English-speaking parents of infants who: (1) were treated with TH between 2011 and 2014; (2) survived to NICU discharge; and (3) were at least 6 months old at the time of study recruitment.
The institutional review board approved the study with the following recruitment strategy: eligible parents received an introductory letter and opt-out postcard. Parents who did not opt-out were contacted by telephone; those who agreed to participate provided written consent.
Questionnaire and Data Collection
Participants completed an audio-recorded semi-structured interview. The interview instrument was adapted from our previous research,13 a review of the literature, and discussion with experts in neonatology, palliative care, and pediatric neurology. Questions targeted parent recall of their communication with clinicians about the birth, TH and subsequent neonatal hospital course, and infant prognosis. One interviewer (M.E.L.) completed all interviews. Infant medical charts were reviewed for clinical information.
Transcript content was analyzed according to the qualitative technique of thematic saturation.11,12 Three investigators (R.D.B., P.K.D., and M.E.L.) independently coded each transcript, then met to compare codes and resolve differences through repeated discussion. Key themes were identified by the frequency with which they occurred in each interview. Recruitment was stopped when no additional thematic content emerged. Descriptive frequencies of quantitative data were produced by using SPSS version 22 (IBM SPSS Statistics, IBM Corporation, Armonk, NY).
Fifty-one parents of infants treated with TH were eligible for study inclusion; 20 participated (Table 1). Children were between 7 and 38 months old at the time of the interview.
Parental experience of communicating with clinicians during the peripartum and neonatal periods was characterized by 3 principle themes: (1) a fragmented pattern of clinician–parent communication mirrored the chaotic maternal and neonatal course; (2) the challenges of discussing the complex therapy of TH; and (3) the uncertainty of prognosis after neonatal encephalopathy. Parents described what went well and what they wished could have gone differently. Age of child at the time of the interview did not affect the results. Illustrative quotations for each theme are presented in Tables 2, 3, and 4.
Patterns of Clinician–Parent Communication
There were many commonalities in the maternal and neonatal clinical courses of participants: an unremarkable and desired pregnancy carried to term, an urgent and chaotic delivery, immediate separation of the neonate from the parents, 72 hours of neonatal TH followed by days to weeks of hospitalization, and long-term monitoring for neurodevelopmental delays. These commonalities created predictable patterns of clinician–parent communication.
Although neonatal encephalopathy and TH are generally managed by neonatal specialists at referral centers, most parents first learned of these topics from clinicians with no special expertise. Because the pregnancies were generally low risk, the maternal-fetal crisis and subsequent cesarean delivery occurred at a community hospital for most parents (85%). After initial resuscitation, the neonatal team quickly left the operating room, with minimal time for communication. Many parents (60%) said that the obstetric and anesthesia teams provided the initial information about the infant. Limited or confusing details about the neonate from these nonpediatricians prompted concern and mistrust for some parents.
Maternal clinicians often continued to be primary sources of information about the infant. Six (30%) mothers remained at the community hospital for >24 hours after delivery, with little direct communication with their infant’s medical team. Even after NICU discharge, obstetricians filled important information gaps. One mother described that her obstetrician reviewed the neonatal MRI with her at a postpartum visit.
Many parents (75%) remembered that most of their communication about their infant happened with nurses. Nurses were particularly valued participants in important discussions, as parents believed the nurses could advocate for their infant and interpret what physicians said. Parents commonly were uncertain who their infant’s “primary” physician was; they felt the primary nursing model promoted communication consistency. Parents appreciated when team member roles were clearly defined.
Few parents sought outside information about TH during the NICU hospitalization; those who did search the Internet found the content “shocking.” After the NICU stay, parents commonly researched neonatal encephalopathy and long-term outcomes. When asked whether it would have been helpful in the NICU to talk with another parent with TH experience, one-half (50%) readily agreed; some (20%) thought this option could have been overwhelming.
The timing of clinician–parent communication was dictated by the urgent birth and largely uniform TH course. Many mothers (65%) underwent emergent cesarean deliveries with general anesthesia and resultant altered mentation. Parents complained of privacy policies that delayed disclosure of medical information to extended family, including information about whether the infant was alive.
Parents preferred to control the timing of important conversations regarding serious results or infant prognosis. They also wanted choice about who would be present for those conversations. They felt overwhelmed when information about long-term neurodevelopmental risks was disclosed simultaneously with the possibility of neonatal death. Some were offended to hear their infant’s brain injury and neurodevelopmental prognosis discussed during teaching rounds; others found rounds confusing because different opinions were presented, and the final plan was not clear.
Most parents felt the flow of information was too slow. Some recommended a designated staff member to communicate timely information. Nearly every parent described a process of piecing together information held by different family members, or via discharge documentation, after the NICU stay.
Information transfer worked best when >1 parent or family member received information simultaneously, even if via speakerphone. Nearly every family had gaps in understanding because 1 person received medical information that he or she had to relay and interpret for the remaining family. This struggle to relay information was stressful. Mothers were at highest risk of misunderstandings because their postpartum recovery reduced the number of early and direct conversations with neonatal clinicians. Maternal understanding was improved when neonatal clinicians came to the mother’s room for updates. One mother was pleased that a NICU nurse video-recorded updates, allowing her to feel more present.
Seven (35%) parents remembered having “family meetings,” away from the bedside. Parents found that these meetings permitted them to ask “big picture” questions that they felt uncomfortable raising on rounds. They also permitted discussion of potentially upsetting information to happen away from their infant’s bedside. In general, parents received most of their information in their infant’s room and from nurses. Several described how practical information from NICU front desk staff (eg, regarding visiting hours or parking) reduced anxiety.
Few parents felt they had been able to ask good questions in the NICU. Parents valued written information, which they used after NICU discharge to put together the fragmented information. Several reported that receiving written materials early on, particularly technical information about the NICU or TH, was overwhelming; this confusion was ameliorated when clinicians reviewed the materials with them, allowing time for questions. Parents described several methods that they used, or wish they had used, to manage the large quantity of information about the maternal and neonatal concerns, such as journals or notebooks. Parents would have liked clinicians to help them organize and prioritize information so it could be more useful after NICU discharge.
Communication Content: Understanding Complex Therapies
The “Big Picture”
Nearly all parents remember feeling bombarded with technical information that confused the “big picture” about why their infant was being cooled and what the cooling was expected to do. Parents felt that clinicians prioritized practical or technical details, with less discussion of their overall relevance.
Notably, although one-third of participants had some baseline medical knowledge, nearly all wanted clinicians to use simple, lay language, especially because few participants had any previous experience of the NICU or TH. Parents found simpler information was easier to understand and pass along, and was less frightening.
At the time of our interviews, many parents maintained incomplete and inaccurate information about TH and about why their infant had received TH. Some confused symptoms of neonatal encephalopathy with reactions to TH; others believed that sedatives used during TH caused some of the infant’s problems. Only 5 parents recognized that the EEG and brain MRI were key prognostic tests. Several parents told us that they still wished someone could review what had happened and help them understand the overall situation. Some advocated for written discharge information that clarifies how “big picture” concerns are related to the need for specific longitudinal follow-up.
Emotions and Information
Overwhelming emotions coincided with their introduction to the technical information about TH. Parents needed help to manage emotions to really hear that information. They valued simple invitations from clinicians to share emotions, such as “How are you doing?” Parents got emotional support from the interdisciplinary team, including pastoral care. A few believed that the presence of a hospital chaplain made them worry that their infant was dying.
Uncertainty About Novel Therapies
Multiple parents were anxious that their infant was receiving what they perceived to be a novel treatment (ie, TH). Some understood initially that TH was a relatively new treatment with limited outcome data; others did not and were distressed to later learn this fact. Some believed that their infant received experimental treatment.
The sense that TH was an unproven treatment heightened parents’ sense of responsibility for “making the decision to cool.” Many felt that they had been asked to choose whether to cool their infant; this perception was entangled with needing to consent for neonatal transfer. Parents were stressed by the perceived need to make such an important decision. This responsibility was particularly burdensome when the mother was under anesthesia; couples had rarely prepared for the father to make serious medical decisions for the infant if the mother was incapacitated.
Prognosis After Neonatal Encephalopathy
“I Did Not—or Could Not—Hear the Information”
At the start of TH, most parents were preoccupied by the possibility of their infant’s death; only after the infant began to stabilize could they process information about long-term outcomes. Some first understood at the NICU follow-up clinic that their infant was at risk for developmental vulnerabilities.
Some parents attributed their gaps in understanding to clinician jargon about neurodevelopmental concerns (eg “problems with social skills” or “need for developmental follow-up”). Many perceived the developmental prognosis as so vague and uncertain that they had no idea what to expect. At the time of the interview, 70% of parents reported that their children had developmental delays in ≥1 domain (motor, language, cognition, or feeding). Fifty-five percent reported language delay; about one-half (55%) of those parents recalled no NICU discussions of possible language delay. A similar number of parents (55%) reported motor delay; 45% of those parents recalled no NICU discussions of possible motor delay. One-quarter of parents reported that their child had behavioral problems; none recalled NICU discussions of these possibilities.
“Wait and See”
Most parents reported that clinicians told them that nothing was certain about their infant’s long-term prognosis; they would have to “wait and see.” At the time of our interviews, most parents still felt burdened by this indefinite uncertainty, which continued to make them anxious and vigilant. Many worried about how to judge their child’s behaviors, wondering whether difficulties with sleep or anger were “normal” versus “brain injury.” Families described treating their infants as “vulnerable children,” modifying their approach to parenting and discipline because of the child’s traumatic experience. Parents wished clinicians could or would signify when their child was “out of the woods.”
Parents of encephalopathic infants treated with TH in this sample faced a consistent set of challenges. For most, an uncomplicated pregnancy ended in a crisis that prompted urgent medical interventions. Mothers spent hours to days incapacitated, often at a distant hospital. Fathers were unprepared for their role as primary communicators and medical decision-makers. The infants received a technical therapy and were at risk for dying and lifetime disability. Families struggled to process medical information and needed help managing their emotions so they could participate more effectively in their infant’s care. Although some parents still lacked important medical details months to years later, more felt overwhelmed by technical details and lacked confidence in their understanding of the “big picture.” All parents left the NICU with some degree of prognostic uncertainty, and they were unprepared for how stressful this situation could be for months to years afterward. Our findings build on previous descriptions of parental experience of hypothermia14 and neonatal neurologic care.15 We defined patterns of communication challenges experienced by parents, and these patterns highlight opportunities to more fully prepare families for the short- and long-term. We identify 5 areas that could benefit from targeted communication interventions.
First, most infants were born at a community hospital and transferred urgently to a referral center. Previous parent descriptions suggest that infant transfer to16 and from17 the NICU can be particularly trying for families and warrants added parental support. Although birth location has not been found to affect infant outcomes with TH,18 our data suggest that emergent neonatal transfer in TH contributes to family knowledge deficits. Early communication, often from nonpediatricians, was generally incomplete and set the stage for family understanding of TH and their infant’s status. Understanding often improved once both parents arrived at the NICU. This finding suggests that effective communication strategies must incorporate the community providers, obstetricians, and other health care professionals who are the “first responders.” Specific strategies could include written materials and community outreach to enhance knowledge about TH among maternal clinicians and pediatricians. Timely feedback to community clinicians about an infant’s TH course could enhance professional education and promote accurate information transfer to the mother. Once the parents arrive at the referral center, neonatal clinicians should consistently review the peripartum and neonatal course to address knowledge gaps.
Mothers were often physically separated from their child and many were dealing with their own physical and emotional recovery, leaving them poorly informed about their infant’s condition. Telephone calls from the infant’s clinicians were less helpful than in-person conversations. Future communication interventions could leverage technology to allow mothers still admitted at other hospitals to view NICU rounds, updates, and nursing care in real-time. Virtual visiting interventions have been trialed in the NICU with some success, and warrant further study.19,20
Parents had difficulty understanding the “big picture” about their infant’s condition and treatment. Information about TH is technical; most infants received additional interventions for multiorgan dysfunction. It is not surprising that parents struggled to navigate this large volume of information and synthesize which tests or treatments were key. Practical interventions to help families organize information, such as written materials and journals, could be adapted for this high-risk population.21–23 Parents also found it challenging to articulate their questions for clinicians. Question prompt lists, which provide high-yield questions to guide clinical encounters, have been shown in other settings to decrease unmet information needs and patient anxiety and to improve patient satisfaction.24–27 These lists could be adapted for this population.
Families universally valued the role of the nurse, not just for bedside infant care but as key advocates and interpreters in serious discussions. This finding supports the value of the primary nursing model on infant and family outcomes.15,28,29 Communication interventions should leverage these relationships. When possible, infants undergoing TH should have a primary nurse, as parents identify that this arrangement promotes better communication. The results of this study and others30 suggest that nurses be active, valued participants in all major discussions with the family.
Finally, prognostic uncertainty characterizes acute care of encephalopathic infants and is stressful to families.14 As prognostication for these infants improves,31,32 we must concurrently prepare families for and provide sustained support around uncertainty. When possible, clinicians should eschew overly vague prognostications and, as many families suggested, provide a combination of best, worst, and most-likely outcomes. Clinicians providing follow-up care should revisit how a child’s prognosis changes over time. Many families worried that their child may develop major neurodevelopmental impairment years after discharge from the NICU, despite normal early development. Routinely assessing for this anxiety during follow-up visits may be helpful.
Our study has several limitations. A recruitment strategy that required families to “opt in” and provide both oral and written consent could have undermined participation by families with limited resources. Non–English-speaking and bereaved parents were excluded from the study; defining communication challenges experienced by these populations is an important next step. This study was performed at a single US referral center; results may not be generalizable to other health care systems. Because our sample included several medically savvy parents, we may have underestimated parents’ typical information needs. Most participants were mothers; given the differences between maternal and paternal experiences around the time of birth, the paternal perspective deserves further study. Finally, interviewing families after discharge may result in recall bias, and information is likely informed by emotional adaptation.
Novel therapies present novel opportunities for intervention. We found that common, actionable communication challenges can occur in neonatal encephalopathy. We hope these data provide a framework for designing future interventions to improve communication between families and clinicians.
- Accepted June 7, 2016.
- Address correspondence to Monica E. Lemmon, MD, Department of Pediatrics, Division of Pediatric Neurology, DUMC 3936, Durham, NC 27710. E-mail:
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Dr Lemmon has received support from the American Academy of Neurology’s Medical Education Research Fellowship and is supported by the National Palliative Care Research Center's career development award. Dr Northington’s work is supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (grants HD070996 and HD074593) and Covidien. Dr Boss is supported through the Cambia Sojourns Scholars Leadership Award through the Cambia Health Foundation. Funded by the National Institutes of Health (NIH).
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
- Brandon DH,
- Tully KP,
- Silva SG, et al.
- DeMier RL,
- Hynan MT,
- Harris HB,
- Manniello RL
- Kim WJ,
- Lee E,
- Kim KR,
- Namkoong K,
- Park ES,
- Rha DW
- Melnyk BM,
- Alpert-Gillis L,
- Feinstein NF, et al
- Meyer EC,
- Ritholz MD,
- Burns JP,
- Truog RD
- Creswell JW,
- Creswell JW
- Miles MB,
- Huberman AM
- Boss RD,
- Hutton N,
- Sulpar LJ,
- West AM,
- Donohue PK
- Nassef SK,
- Blennow M,
- Jirwe M
- Gibbins SA,
- Chapman JS
- Rhoads SJ,
- Green AL,
- Lewis SD,
- Rakes L
- Rhoads SJ,
- Green A,
- Gauss CH,
- Mitchell A,
- Pate B
- Ronan S,
- Liberatos P,
- Weingarten S, et al.
- Ahmed R,
- McCaffery KJ,
- Aslani P
- Brown RF,
- Shuk E,
- Leighl N, et al.
- Yeh JC,
- Cheng MJ,
- Chung CH,
- Smith TJ
- Millette K.
- Copyright © 2016 by the American Academy of Pediatrics