Counseling parents of premature neonates on neuroimaging findings

Abstract

While medical advancements have led to improved survival of extremely premature infants, children remain at risk for brain injury and neurodevelopmental impairment. Brain imaging can offer insight into an infant’s acute and long-term outcome; however, counseling parents about the results and implications of brain imaging remains challenging. The purpose of this article is to review the current literature and describe the challenges associated with counseling families of premature infants on neuroimaging findings. We propose a framework to guide clinicians in counseling parents about brain imaging results, informed by best practices in other disciplines: (FIGURE): 1) Formulate a plan 2) Identify parental needs and values 3) Give information 4) Acknowledge Uncertainty 5) Recognize and Respond to emotions 6) Discuss Expectations and Establish follow-up.

Introduction

While medical advancements have led to improved survival of extremely premature infants, children remain at risk for brain injury and neurodevelopmental impairment. ^1–4 Early outcome studies of very low birth weight infants showed an association between high-grade IVH and long-term neurologic deficits, leading the American Academy of Neurology to recommend universal cranial ultrasonographic screening for all infants born at less than 30 weeks’ gestation in 2002. ⁵ Since then, routine imaging and early identification of brain lesions have assisted clinicians in counseling families regarding the need for acute interventions, the importance of long-term care and close follow-up, and how to make decisions about care in the presence of poor neurologic prognosis.^1,5–8

Over time, magnetic resonance imaging (MRI) has become increasingly used to further characterize the impact of prematurity on the developing brain. Brain imaging in the preterm neonate is a critical element of mitigating neurodevelopmental sequelae; it allows for the prompt identification of infants in need of acute neurosurgical intervention, alerts clinicians to those infants at highest risk of neurodevelopmental impairment, and provides clinicians and parents with information to help them prepare for the future. Yet, the prognostic ability of preterm brain imaging is imperfect and prognostication remains one of the most challenging aspects of neurological care in the neonatal intensive care unit (NICU).^2,8–11

Existing data on parent preferences regarding the value and impact of brain imaging is mixed. While studies suggest that parents desire transparent and balanced information about infant prognosis, ^12–14 some parents and researchers have raised concern that brain imaging can heighten uncertainty in the absence of a clear benefit.^8,15 Two parents echoed this concern in a commentary sharing their own experience with neonatal MRI:

“The doctor was compassionate but vague about the possible motor, cognitive and behavioural problems that Maren could face. He said that it was hard to predict outcomes from MRIs, and it was not certain at all Maren would be disabled. In fact, many children with abnormal MRIs are not disabled.”¹⁶

Communicating medical information is challenging in the intensive care environment as information is complex, requires personalization, can be emotionally-charged and may have far-reaching consequences.^17,18 Clear and empathetic communication is key to facilitating parental understanding and shared decision making, while poor communication can result in anger, mistrust and regret.¹⁹ Amidst these challenges, clinicians must provide parents with timely, balanced, and honest information. Here, we outline key challenges that arise in the counseling of families about brain imaging findings and offer strategies to guide clinicians in conversations with families about brain imaging results and their neurodevelopmental implications.

Navigating Challenges:

Supporting parent mental health

The way in which parents prefer to receive and process medical information is impacted by many factors including their: personal histories, experiences, trauma, external stressors, family and social support, financial security and underlying physical and mental health. When discussing brain imaging of neonates, practitioners must consider their primary audience of caregivers; many parents are experiencing a traumatic event, which may undermine their ability to process medical information.

Parents of premature infants and infants with neurologic conditions frequently report feelings of shock and disbelief. These emotions can hinder a parent’s ability to process and retain information. Parents often recall these conversations as being “hazy” or “in a blur”.^18,20 In addition, parents in the NICU consistently endorse higher rates of emotional distress, anxiety, depression and post-traumatic stress disorder than the general population.^21–23 As found in most scenarios of communicating amidst trauma, it is important for healthcare professionals to identify the desired level of communication for parents in distress, which can be impacted by their personal experiences, expectations for their child and ability to cope with uncertainty.^20,24

While some caregivers may be eager to obtain any information available regarding their child’s health, others may find too much information distressing.²⁰ These phenotypes represent active versus passive engagement and mirror stress-coping techniques of confrontation versus avoidance. A parent who favors active communication may express a need for “detailed, specific, individualized information” about their baby’s possible outcomes.²⁰ They may want to review relevant clinical resources on their own, speak with other parents and desire neuroimaging results as soon as possible.²⁰

Parents who prefer passive communication may request information on a strictly need-to-know basis, finding ancillary reports overwhelming. These parents cite that, “too much knowledge can give you too many sleepless nights” and that they would rather not know every detail of their child’s NICU stay.^5,20,25 However, every family is different, and while some families may request numbers and statistics, others may choose to focus on the “big picture.”^17,24,26,27

Furthermore, additional family members or loved ones may not always be available for support, due to socio-economical restrictions or hospital protocols during high-risk seasons.^28,29 Infants are often admitted to the NICU for months and parents may have to return to work, care for other children or travel far distances to visit their child; reinforcing feelings of guilt and isolation.

Levetown et al (2008) asserts that during the disclosure of medical information, parents require both cognitive (the need to understand information) and affective (the emotional need to feel understood) communication. Taken together, these studies highlight the importance of effective communication about brain imaging and reinforce that the way clinicians navigate these early conversations with parents have the potential to amplify or ameliorate distress.

“For doctors, these discussions are routine. For us, these conversations change our lives forever.”²⁶

Estimating and communicating prognosis

In addition to supporting parents’ emotional needs, it is important for clinicians to identify the values and outcomes that are most important to each patient’s family, as research has indicated that parents and clinicians perceive prognostic information differently from each other.¹³ While clinicians tend to concentrate on neurologic outcomes, parents are often preoccupied with whether or not their infant will survive, and may place less importance on long-term disability; particularly during initial conversations.^12–14

Communicating the information that parents care about is further confounded by challenges in how prognosis is defined and measured. Composite outcomes may lump together outcomes that carry different weights for parents and clinicians. For example, the outcome “death or neurodevelopmental impairment” conflates risk of death and impairment, when many families do not view these outcomes to be equal.^25,30 Similarly, parents may value aspects of neurodevelopmental impairment (for example, motor impairment or hearing impairment) differently from one another. Clinicians looking to counsel families on outcome should ensure they review data that speaks to outcomes of interest to a given family.^25,30

Furthermore, the neurodevelopmental impairments that have been studied were mostly chosen by clinicians, in part because they are easily quantifiable and measurable. While most parents are concerned with potential hearing loss and motor deficits, few studies have prioritized functional outcomes like independent living, endurance, perceived quality of life, sleep disturbances and the impact of chronic conditions on other family members.^13,30 One parent expressed this dichotomy by stating that:

“Even though levels of cognitive and motor problems can often be predicted based on magnetic resonance imaging results, abnormal electroencephalogram findings, and a neonate’s hospital course, the happiness and acceptance a child will achieve in their families and communities cannot.”³¹

While parents base their decisions on many factors, the important role of emotions, regret, hope, spirituality, quality of life, resilience and social support is rarely studied or discussed.^13,14,24,31

Finally, much of what clinicians know about long-term prognosis of premature infants with neurological injuries is based on emerging research. While these new studies can help predict the range of outcomes for a particular diagnosis, the outcome for an individual infant is dependent on a host of interacting intrinsic (neuronal plasticity, timing of injury, co-morbidities) and extrinsic (socioeconomic status, parental involvement and support, access to follow-up clinics, wait times for therapy, etc.) factors; further confounding predictions of prognosis.¹⁴ Abnormal findings on head ultrasounds or MRIs do not universally translate into a clinically significant developmental delay, just as normal head imaging does not ensure typical development. Fortunately, emerging therapies offer ongoing promise in mitigating neurodevelopmental sequelae in the setting of prematurity.

Communicating in the intensive care environment

These difficult interactions are further exacerbated by the environment of the NICU; existing data suggests that it takes parents at least 2 weeks to adjust to this new, often chaotic setting.²⁰ Parents have described their initial impression of the NICU as being “horrific” and “terrifying’; acknowledging that they were not prepared for the unfamiliar visual and auditory stimuli that they encountered.²⁰

Due to the high potential for increased emotional vulnerability, parents may require additional communication, reinforcement and reassurance throughout their child’s hospitalization.²⁰ While many studies have documented the importance of consistent providers in establishing a trusting relationship, limited resources, alternating schedules and high staff turnover often make this difficult to achieve and can lead to multiple providers and inconsistent communication.^32–35

A study by Meert et al.³⁶ surveyed parents after the death of their child in the PICU and found that the majority (n=40/56; 70%) of caregivers wanted to provide feedback regarding the way clinicians communicated with them during their child’s hospitalization. They identified the following communication related concerns: inadequate availability of physicians, perceived lack of empathy, incomplete disclosure and the use of overly complex or contradictory language.³⁶

Of these, availability was mentioned the most often. Similar to other studies, parents expressed a desire to meet with senior physicians a “multitude of times” and receive information at different time points, across their child’s hospitalization.^27,36 Parents appreciated when clinicians presented information in a straightforward, honest way.³⁶ Communication that is perceived as empathetic, warm and responsive can build trust, improve parental satisfaction and enhance compliance with instructions and treatment adherence.^19,36 In fact, greater trust with the physician has more of an impact on patient recall and satisfaction than written instructions or increased face to face time.¹⁹

Similarly, the repercussions of inadequate communication can also have far-reaching consequences as it is estimated that 35–70% of medico-legal actions are the result of “poor delivery of information, failure to understand family perspectives, failure to incorporate the patient’s/parents’ values into the plan and feelings of desertion.”^19,37 Some parents reported that even when physicians were physically present, they often felt ignored or like they were not actively involved in the decisions and procedures regarding their children.^27,36

Parents report that information is often communicated to them by the child’s primary nurse, who may not always be involved in larger family conferences or conversations regarding a particular patient’s care.²⁰ The dissemination of information via multiple health care providers can result in conflicting information that can be distressing to the family and damaging to the physician-parent relationship. Interdisciplinary teamwork, collaboration, thoughtful planning, and detailed documentation of family meetings can decrease this risk.¹⁹

Facilitating communication skills training

Given all these factors, healthcare professionals may feel that there is no good way to break bad news. While communication is considered the most common procedure in medicine, it has not traditionally received the same resources, attention or training as other subjects.¹⁹ Until recently, much of this training was considered part of the “hidden curriculum” and was taught through trial and error or direct modeling of mentors. However, this form of learning is inconsistent and can result in inadequate breadth and depth of skills. Studies have shown that clinicians across all levels of training and specialties have expressed discomfort with disclosing bad news.^19,36,38

Fortunately, studies have also shown that empathy and communication are both teachable skills that can be enhanced through formal medical education.^19,39 Providers typically appreciate this additional training which can significantly improve their interactions with patients and their families.^19,39–41 Parents across multiple disciplines have provided consistent feedback to clinicians regarding positive communication techniques and appreciate when providers express genuine concern for their child.^19,24,26,42 They note that the most important factors influencing communication are the demeanor of the physician, clarity of the message, privacy of the conversation and responsiveness to questions.^19,24,36

As a result, new tools and training approaches have been developed to improve communication skills. Techniques vary and include standardized patients, role play, video-taped interviews, direct feedback, didactic sessions, standardized protocols and intensive week-long workshops.^19,43 For example, in a recent publication in Pediatrics, clinicians from various backgrounds participated in a standardized, videotaped resuscitation in which the patient ultimately died.¹⁵ Parent and clinician evaluators independently rated these recordings and identified several easily reproducible actions that resulted in optimal communication.

They found that good communicators were more likely to: “introduce themselves, use the patient’s name, acknowledge parental presence, prepare the parents, sit down, decrease guilt, permit silence, and have knowledge about next steps.”¹⁵ While these communication techniques were identified during resuscitation, many of them can be applied to the disclosure of difficult news, including neuroimaging findings.

In addition to incorporating positive verbal and nonverbal communication skills, it is also important to elicit the values and language most important to an individual family member, as parents and clinicians often process information regarding prognosis differently.^13,24,30 The mnemonic “SOBPIE” can help clinicians identify factors such as regret, hope, resilience and support that may be impacting comprehension.²⁴ Similarly, Vital Talk, a nonprofit organization dedicated to helping clinicians prepare and deliver bad news, uses the mnemonic “GUIDE” to remind speakers to prioritize understanding and empathy during difficult conversations.^40,44

Finally, the AAP also recommends several strategies to promote family-centered communication and support in the NICU, including: consistent caregivers when possible; practitioners that are trained in meeting facilitation and conflict management; use of open-ended questions and reflective explanation; acknowledgment of uncertainty; and discussion of likely and hoped for outcomes.

Guiding Conversations about neonatal brain imaging

While very little literature exists examining the best ways to explicitly disclose neuroimaging findings to patients and their families, these existing frameworks provide the necessary foundation for image-specific recommendations that can foster parental engagement and understanding of images. For example, it is important to use the patient’s name, identify the parents’ values and informational needs and prepare the listener for bad news, whatever the context.

Here we adapt existing frameworks to guide conversations about brain imaging findings (“FIGURE”), encouraging clinicians to: 1) Formulate a plan 2) Identify parental needs and values 3) Give information 4) Acknowledge Uncertainty 5) Recognize and Respond to emotions and 6) Discuss Expectations and Establish follow-up (Figure 1).

Fig. 1.

A framework to guide clinicians in counseling parents about brain imaging results

Formulate a plan:

When preparing to schedule a family meeting to disclose neuroimaging findings, clinicians should assemble the correct team, establish the preferred setting and determine the optimal timing for the conversation. As mentioned, parents value continuity in caregivers. Because this is often not possible, consistent communication between providers is imperative, as conflicting information from different specialists or providers, especially within the ICU setting, can be extremely upsetting for families and can result in anger and mistrust.^{12,13,19,36,39,45}

Identifying a clear “team leader” can be a powerful tool for addressing this issue.^28,34 While team leaders are recognized as a critical component of any code team, this role can be just as important when caring for a child with a new diagnosis or chronic condition. Identifying one person who is ideally familiar with the patient, their family, and prior conversations can build trust, provide stability and minimize confusion.^34,45 Prior to holding a family meeting, it is important for all team members to be on the same page in terms of diagnosis and next steps. Holding a pre-meeting to discuss and resolve any outstanding concerns can be helpful in organizing the conversation and delivering a clear, unified message to the family.^12,46

While it is helpful to have the relevant specialists available to answer pertinent questions, too many clinicians can be overwhelming and intimidating for families. Instead, determine which team members will be able to best facilitate the family’s understanding of any new or upsetting information. Critical care guidelines and existing data suggest that the patient’s bedside nurse should also be included in all major parent-clinician conversations.^13,47,48 Other team members, such as social workers, chaplains and translators can provide valuable emotional, spiritual, cultural and religious support.^49,50 Because much of their formal training focuses on communication and conflict resolution, they can bring unique skills to the conversation and help identify when or why misunderstandings may have occurred.^19,50

Finally, the timing and environment of these conversations can be extremely important. When scheduling a family meeting, clinicians should ensure that parents are empowered to include family members, faith leaders, friends or other sources of support in major conversations with the clinical team.^19,42,49 Where parents are physically located when they hear about a new diagnosis or worsening clinical status can also have a lasting impact on their perception of the event. For example, existing studies of parents of patients with cancer suggest that parents can recall extensive details of the location where they first learned of the diagnosis or were told that their child was seriously ill.¹⁹ Some parents may wish to remain at the bedside while others may find it challenging to process difficult news while looking at their child.⁵¹ NICUs that are arranged in large, open rooms, often have other providers and parents present and are rarely the ideal place to disclose sensitive or emotionally charged information. If possible, clinicians should find a quiet, private room to encourage parental engagement and questions by creating a safe space to optimize physical and emotional comfort.^{20,42,47,52,53}

Because these meetings often contain information that is difficult for families to digest, the vast majority of parents (~70%) will still report that they would like more information regarding their child’s condition and appreciate hearing from senior staff on multiple occasions.^19,20 When possible, it is best to break up conversations regarding a new, poor prognosis and discussions regarding decisions.¹³ Attempting to schedule these meetings during times of relative clinical stability can also help parents focus on the relevant information. Frequent, shorter check-ins following this initial meeting and during rounds can be particularly helpful as parents state that it gives them the opportunity to interact with senior staff, feel included in decisions, understand any changes that are being made and learn more about their child’s condition.^20,47

Identify parent information and communication needs

Before disclosing new imaging findings, clinicians should begin with assessing parents’ information and communication needs. Clinicians can begin by asking families what they understand about their child’s condition so far, what questions or concerns they’d like to address today and what their hopes are for their child’s future. Clinicians should take the time to clarify any responses that may have varied interpretations. For example, parents may use words like “normal” or “good quality of life” in describing their hopes and goals for their child’s outcome. Clinicians should follow these responses with clarifying questions like, “What does a good quality of life look like for your family?” Clarifying the parents’ goals can help clinicians manage expectations and provide tailored information. Engaging parents in collaborative discussions regarding their hopes, dreams and goals for their child can also build trust and shared understanding.¹⁴

Additionally, it is important to recognize that individual parents, family members, and clinicians may have different hopes or fears for the same child. For example, one parent may value life with disability differently than another, and differently than treating clinicians.²⁴ By asking open-ended questions, clinicians can help parents understand each other and better personalize information delivery. A large part of exploring values and personalizing communication requires active listening on the part of the clinician. This practice can help the physician determine where values and information needs align and where they differ; encouraging parent-centered communication.^13,14,45

As discussed, not all parents will want to know the results of neuroimaging findings. Clinicians should ask permission to disclose imaging results and their implications. Clinicians should not assume that parents who desire results disclosure also desire information about the relationship of abnormal findings to outcome. To assess this, clinicians can use guiding questions like, “We have the results of [name’s] brain imaging results; would you like to review those today?” After results disclosure, the clinician can ask permission to proceed with discussion of prognosis, for example, “Some families want to know what findings like these might mean for their child’s future. Would you like to discuss that now?”

Finally, clinicians should determine parents’ communication style (i.e., prefer an active vs passive role) and the amount of information they want to receive. One way to do this is by asking questions such as, “Some parents like to know every detail possible while others prefer the big picture. What would you prefer?”^20,24 Clinicians should also assess parents’ preferred mode of information delivery. For example, parents should be asked whether they would like to see the images being discussed, whether statistical information is useful to them, or whether they would like to hear the best, worst, and most likely outcome.

Table 1 lists some open-ended questions that can help clinicians target specific key areas of concern.^19,24,54

Table 1.

Prompts to elicit parental understanding, concerns and communication preferences

Assess initial understanding	“Tell me about Emily” “What have you been told so far about Emily’s condition? “How do you feel like Emily has been doing?”
Identify primary concerns	“What are your biggest concerns?” “What goals do you have for today’s conversation?” “What symptoms are the greatest concern for you?”
Identify values, hopes and dreams	“What are your hopes for Emily?” “What are your goals for Emily?” “What worries you the most about Emily’s future?”
Determine communication preferences	“Tell me about how you would like to communicate with the medical team.”
	“Some parents appreciate knowing all of the details about their child’s condition, others appreciate hearing the big picture. What type of information would be the most helpful to you?”
	“When we talk about the results of brain imaging, some families like to look at the pictures with us. Would you like to see the images today?”
	“When we talk about the future, some parents like to hear about numbers and statistics, others like to hear about the best case, worst case, and most likely outcomes. What information would be most helpful to you?”
Explore how this impacts their home life	“How have things been at home?” “How are your other children doing?” “How has Emily’s illness impacted your family?”
Identify additional services/roles of the team	“For some families, faith is a big part of their journey. Is faith important to your family? [If yes] How can we help support your faith while Emily is in the hospital?
	“What does work look like for you right now?”
	“Some families need help navigating childcare, transportation, or talking with their employer; how can we help you with those things?”
	“Tell me about your support system.”
	“How else can we help support you?”

^*Table content is informed by existing work by Levetown (2008) and Janvier (2014).

Give information

When discussing imaging findings: personalize the information, avoid medical jargon, demonstrate empathy, pause for questions, frequently re-assess understanding and attempt to balance information regarding probable deficits and strengths. Conversations should be personalized to incorporate the parents’ information needs and preferred mode of information delivery. If it is the provider’s first time meeting a family, it is appropriate to ask them how to pronounce the child’s name and invite clarification. Clinicians should always use the patient’s preferred name and gender as families want to know that clinicians are caring for their child and not a diagnosis.^19,42,45,46

Studies have shown that parents also value providers who communicate in clear, laymen’s terms and avoid overly complex “doctor speak” or medical jargon.^{14,36,42,45,46} When feasible, name the illness of concern and write it down for parents. It may also be helpful to use other visual tools, such as drawings, models or actual images when possible.^14,19 Providers should be mindful to use basic verbal and nonverbal communication such as good eye contact, open body language, sitting at the same level as the parents and expressing concern.^46,47

As clinicians begin to discuss imaging, they should revisit the parent’s preferred mode of information delivery. If parents want to view the actual images, clinicians should take time in advance to prepare them by pulling up and finding the most straightforward sequences to review together. Clinicians should then begin to orient parents using common anatomical landmarks like the eyes and ears which can help parents understand the imaging plane. Clinicians should also give attention to areas that are normal, in addition to those that are abnormal, and use layperson’s terms to describe any unexpected or abnormal findings.

Parents appreciate when the pace of information provided matches their ability to comprehend it.^36,42 During the delivery of information, providers should pause frequently, repeat key points, allow parents to react emotionally and assess understanding throughout the process. Providers can then ask parents to summarize what they just learned in their own words.¹⁹ This tactic gives the provider an opportunity to immediately address any misunderstandings, invite additional questions and provide clarification.

Finally, many parents find the NICU environment exhausting and feel that nearly all conversations focus on the negative aspects of what their child “can’t do.” Parents appreciate when clinicians take the time to recognize their child’s strengths and enjoy talking about things their child might be able to accomplish in the future, in addition to any expected impairments.¹⁹ Clinicians can tailor this discussion to parents’ stated information needs and goals. For example, clinicians can ask “What things about your child’s future most worry you?” and specifically address the likelihood of those outcomes occurring.

Acknowledge Uncertainty

Families appreciate when clinicians clearly communicate what is known, including the presence, degree and role of uncertainty.^12,14 While some clinicians may perceive the acknowledgement of uncertainty as a personal or professional deficit, parents interpret this admission as an indication of trustworthiness.^8,14 Because long-term neurologic outcomes are based on a variety of complex, interacting intrinsic and extrinsic factors, it is important for clinicians to remain humble, even when the prognosis seems grim, and acknowledge that it is difficult to predict how an individual patient will do.^14,55 While the majority of parents (72%) endorse stress and anxiety related to both immediate and long-term uncertainty regarding test results, neuroimaging findings and prognosis,¹² a study of surrogate decision makers found that most caretakers acknowledge that some degree of uncertainty is expected when dealing with chronic illness.¹⁴

It is also important for clinicians to regularly self-reflect and examine their own biases prior to delivering information about neurologic prognosis, as research has shown that clinicians are consistently more pessimistic than families when assessing quality of life and disability.^25,56 Physicians’ personal experiences, religious beliefs and unconscious biases may impact how conversations regarding prognosis are discussed and influence their assessment of imaging findings, recommendations for future care and potential interventions.^8,14

Clearly communicating the role and degree of uncertainty throughout the child’s hospitalization can help families navigate the balance between hope for the future and the likelihood of a poor outcome.¹³ Parents nearly always pair conversations about prognosis and uncertainty with discussions about hope and spirituality.¹³ Because parents often talk about hope in relation to “exceptionalism” or praying for a miracle, clinicians sometimes misperceive this language as a lack of understanding and may attempt to re-direct families.^13,57 Misclassifying hope as denial, however, may result in increased moral distress for team members and can lead to unnecessary tension between clinicians and families, leading to mistrust, anger and frustration.⁵⁷

While hope and realism have traditionally been described in the medical literature as opposing forces on opposite sides of a pendulum, several new studies have shown that hope and realism are not mutually exclusive and often coexist.^13,57,58 Parents can acknowledge that their child has a grim prognosis while also maintaining hope that their child will do better than anticipated.^13,57 In a recent study examining the relationship between hope, realism and bereavement, one parent stated that, “For many, being a good parent is inextricably linked with sustaining hope.”⁵⁷ In fact, maintaining hope has been identified as a healthy coping mechanism for dealing with bad news.^13,19 Clinicians can validate parents’ feelings and experiences with statements such as, “I also hope for a cure or miracle with you.” These statements have been shown to build rapport without propagating false hope.⁵⁷

Recognize/Respond to Emotional Distress

Families frequently express feeling as though they lack control when they have a child admitted to the NICU. Addressing parents’ emotional needs can improve their relationship with the staff caring for their child and provide them with some comfort when they are unable to be physically present at the child’s beside.^19,47 Clinicians should recognize and name emotional distress and leave space for it. Parents are often in shock after hearing about abnormal results or a poor prognosis and they may need time to digest this new information. Clinicians should offer to engage a support person like a social worker, chaplain, nurse, other family member.

Often parents will express anger or frustration. Clinicians can validate and acknowledge these emotions by responding empathetically. For example, “I can tell you are very upset by this news. Whatever you are feeling is ok. Can you tell me what is most concerning for you?” Some parents may be unable to continue to process new information in the midst of intense emotions. In these situations, allowing some time and space for them to grieve, process their emotions, digest new information and formulate questions can be helpful.¹⁹

The vast majority of parents in the NICU will feel significant guilt about their child’s illness. Reinforcing that this situation is not their fault and that they could not have prevented it can be extremely meaningful to parents and help relieve stress and worry. Further recognizing the positive role that parents’ play in their child’s care and development can engender trust and confidence. Clinicians can comment on the interactions they have observed through statements such as, “Emily is so lucky to have someone like you to love her and fight for her” or “I can see how much you love Emily and see the special way she responds to your voice.” Parents with children in the NICU are not able to care for their infants at home but still feel responsible for their well-being and want to be recognized as the primary caregiver.¹⁹

Set expectations for the future & Establish follow-up

Because parents are generally unable to control much of their child’s early NICU treatment, they appreciate opportunities to participate in their infant’s care, including holding their child, assisting with routine care and actively participating in physical and feeding therapies.^12,46,59 Allowing parents to contribute to the care of their infant can be an empowering experience and mitigate some feelings of anxiety and hopelessness; actively engaging parents in their child’s physical therapy or daily routine can help them recoup some of the parental role they may perceive as delayed or lacking.^12,46,59

Clinicians should support memory-making efforts (like photographs, hand prints, acknowledging milestones) and make a clear follow-up plan to avoid feelings of abandonment following death or discharge.¹⁴ Engaging additional support through social workers, spiritual leaders and family members can help parents process what new information might mean for their lives long-term.¹³ Pairing families with non-medical team members can also give them access to additional resources within the community, such as peer-to-peer support, group support and financial resources and grants. ¹³

Multiple studies have shown that parents require frequent communication and reassurance and that this need persists throughout the hospital course and after, despite improvements in clinical stability or discharge home.^13,19,47 Prior to ending a family meeting, clinicians and families should make a concrete plan regarding next steps. Parents should be informed about whether their child will require any additional laboratory tests or imaging and have an opportunity to discuss possible surgical interventions and other specialists they should meet.

Clinicians should also clearly establish follow-up meetings with either the same provider or another member of the group. If continuity of providers is not possible, clinicians should stress that while the actual team members may change, the group will continue to communicate regularly to ensure that their child receives the best care possible. Finally, it is important to reinforce that the parents are never alone in the care of their child and that the medical team will continue to support them both during and after their hospitalization.

Conclusion:

Despite improvements in neuroimaging for premature infants, prognostication remains one of the most important, yet challenging aspects of neonatal care in the NICU. As described, multiple tools addressing effective communication strategies with parents have been developed and have been shown to improve provider confidence and empathy. This review explores the current literature, suggests recommendations based on best practices and introduces a novel framework for delivering neuroimaging findings in the premature neonate. Important knowledge gaps remain, including parent preferences for results disclosure, the impact of counseling on infant and parent outcomes, and how parents weigh neuro-imaging findings as they make decisions for their children.