PAUL M. ROBINS and MARY ROURKE

The experience of pediatric critical care is quite likely to be a traumatic one for children and families. It has been well documented that serious childhood illness—including cancer, burns, serious injury, and many other life-threatening pediatric conditions or experiences—is commonly associated with significant psychological trauma reactions for both the affected child and for his or her parents (1–4). The implied urgency of high-level intensive medical care, including the pervasiveness of significant life threat and the experience of pain and/or risky medical procedures, is clearly likely to intensify feelings of intense fear, horror, and helplessness—all of which are precursors to psychological trauma. Indeed, research indicates that high percentages of children in critical care environments and their parents report very high anxiety (5–6) as well as significant levels of trauma symptoms, with nearly a third of parents meeting diagnostic criteria for acute stress disorder while the child is being treated in a critical care unit (7). These symptoms usually include reexperiencing scary or horrifying aspects of the illness or care, experiencing very high levels of arousal and panic, and, when possible, avoiding events or people that are associated with the trauma (3).

Understanding trauma reactions in pediatric critical care is important for several reasons. It is well documented that early trauma reactions predict longer-term trauma reactions, which ultimately derail both long-term medical care as well as normal development and quality of life (2–3,8–10). Further, decision-making during the delivery of critical care is impacted when the parental decision-makers are traumatized. Evidence supports the negative effect of trauma on decision-making, suggesting that trauma interferes with adult coping in two ways: it compromises individual coping and problem-solving skills and it impedes the ability of adults to come together and work collaboratively on coping with their intimate partners (11).

Despite the indications that trauma is an understandable and common experience when children are critically injured or sick, it may not be routinely or adequately recognized or addressed by physicians or nurses (12). Citing these concerns, the federally funded National Child Traumatic Stress Network has called for health care providers and others working with traumatized children and their families to develop models of care that are trauma-informed and that address coordination across the multiple systems in which children live and grow (9).

Following these guidelines, the purpose of this chapter is to present a trauma-informed and systems-based framework that might guide care provided to children and families in pediatric critical care environments. We first present an overview of pediatric medical traumatic stress (PMTS) and how it manifests in children and parents during intensive medical crises. Next, we discuss a systems-informed framework to understand psychological reactions related to acute trauma in pediatric health care settings. Using a case example, we then illustrate how those trauma-related systemic concerns might appear, and provide guidelines for how to use a systemic understanding of PMTS to work effectively at the bedside.

■ UNDERSTANDING PMTS

PMTS is a normative reaction of parents and children to the trauma of serious childhood illness and injury. While PMTS is derived from the construct of posttraumatic stress disorder (PTSD) (13), there are essential differences between the two constructs. Both are reactions to trauma, which is defined as “…experiencing, witnessing, or being confronted with an event or events that involve actual or threatened death or serious injury or a threat to the physical integrity of oneself or others” (13), and both occur after one experiences fear, horror, or helplessness as an initial reaction to the trauma. In the case of PMTS, the trauma may be the diagnosis or some aspect(s) of the illness or treatment. PTSD is a psychiatric diagnosis, and its symptoms cause global and clinically significant distress and/or impairment in social, occupational, or other important areas of functioning. In contrast, PMTS is defined as a normative set of psychological and physiologic responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences, and it occurs at some level in nearly all parents and many children who are faced with a serious medical illness (14). Though PMTS reactions are normative reactions to the nonnormative stressors of serious childhood illness, they lead to, and are intensified by, the challenges faced by parents of children experiencing medical trauma or illness. These challenges include role changes, parental stress, marital dissatisfaction, discontinuity of care, compromised condition management, communication barriers, anxiety surrounding decision making, conflict with the medical team and school system, lack of community and peer support, and lack of economic resources (15–21).

PMTS responses can vary in intensity, may be disruptive to functioning, and can be experienced simultaneously, but in different ways, by multiple members of the same family (8,22). As outlined by the National Child Traumatic Stress Network (NCTSN) (www.nctsn.org), PMTS symptoms include:

1. 
   

   Reexperiencing of the traumatic event. Reexperiencing is a broad term that refers to the unintended and/or uncontrollable repeated experience of upsetting thoughts or feelings associated with the trauma. Reexperiencing can be unprovoked, or can be triggered by exposure to reminders in the environment. Examples of reexperiencing include intrusive and obsessive thoughts about aspects of the medical trauma (e.g., replaying the trip to the emergency department, or the moment at which a child was injured), periods of calm that are shattered by unwanted recollections of the traumatic event, recurrent distressing dreams, unpleasant visceral reactions when encountering triggers (e.g., smelling reminders of the trauma causes nausea or dizziness), and intense distress when reminded of prior scary events (e.g., panic when waiting for test results that previously had scary results).

   
   
2. 
   

   Avoidance and cognitive/emotional numbing related to the traumatic event(s). This broad category refers to two kinds of symptoms. Parents and children may actively or passively avoid thinking about or dealing with issues related to the trauma or with people or places that remind them of the trauma. For example, parents may avoid a certain physician or nurse, or may, in extreme cases, be unable to come to the bedside. Passive avoidance can include a very limited or nonexistent memory for portions of the trauma experience. Parents or children may not remember important elements of the diagnosis or treatment, or the events that caused an injury; they may forget important parts of a treatment conversation. The second aspect of this cluster of symptoms involves a sense of emotional numbing. People experiencing this symptom may look unable to experience emotion of any kind, and may seem frozen, disoriented, or like they are not processing important parts of what is happening.

   
   
3. 
   

   Emotional arousal. A high level of arousal is a common symptom during and after a medical trauma. While this arousal may look like a traditional panic response (e.g., palpitations, shortness of breath, dizziness), it may also include difficulties with organization and concentration, difficulty remembering medical responsibilities or organizing oneself for the next level of medical care, as well as angry, irritable, and inappropriate outbursts with medical staff.

There can be significant adaptive functions of PMTS. For example, reexperiencing events helps parents and children process and resolve trauma memories, while avoidance and distraction can help parents tolerate distress and get through the hospitalization and medical procedures (3). However, these thoughts, feelings, and behaviors can also substantially complicate an already complex care system. Making accurate medical assessments and delivering urgent interventions with a child experiencing traumatic distress can be a serious challenge. While the presence of parents at the bedside, a hallmark of family-centered pediatric care, allows parents to comfort children, it also introduces the possibility of parental trauma reactions interfering with care. It becomes increasingly difficult to work consistently with parents as medical decision-makers if parents are experiencing unpredictable periods of intense anxiety, mood lability, or moments of paniclike symptoms. Similarly, at the other extreme, parents who seem numb or frozen, as though they are not processing important information, may avoid seeing or talking to the care team or may not be able to partner effectively with team. Neither parent will be able to calm a scared or hurting child, or actively and effectively partner with the critical care team.

As the preceding paragraph suggests, demands on a child and family in a critical care unit are quite often inconsistent with good peritrauma care. People experiencing trauma require safe, predictable environments in which they have thorough information and experience support and control over what is happening (3,14). Paradoxically, critical care environments often are unpredictable, require quick decisions with no time to ponder information, and present multiple unplanned exposures to things that may trigger trauma responses. Multiple members of a family—all of whom may be present in the care environment—may be having simultaneous, but very different trauma reactions (8,22).

Additionally, there is an increasing awareness that pediatric health care providers may also have their own trauma reactions to children that they are treating or as a result of their chronic and cumulative exposure to and participation in multiple pediatric tragedies (23–25). Members of the medical care team may be aiming to deliver urgent medical care in a calming manner, while attempting to manage their own reactions.

A systems context for understanding the impact of medical trauma on children, families, and the health care team can help frame an understanding of how pediatric medical trauma can complicate care. In particular, family systems models can assist in understanding how family development can be disrupted by the experience of medical trauma. Effective clinical responses that can accommodate the effects of the trauma on the child, family, and health care team can be developed.

■ A SYSTEMIC UNDERSTANDING OF FAMILIES IN CRISIS

Pediatric medical trauma, like any major crisis, prompts a family to move unexpectedly and abruptly into a period of acute crisis. How the family responds to this turmoil and navigates their own traumatic reactions is based in part on two factors. First, understanding how the family was organized before the medical crisis can inform a team about a family’s preexisting strengths/resources and vulnerabilities. While a solid family organization prior to a trauma may lead to a stronger response to trauma, processes that worked for a family in a time of health may be ineffective during a time of crisis. Therefore, the second important factor to consider is how the family’s organization changes in response to and during the period of critical care. At the moment of a trauma, the medical well-being of the child becomes paramount, forcing all family members to abandon old patterns and urgently implement new patterns of behavior necessary to navigate the crisis. Understanding how families accomplish this transition provides an important window into their adaptive functioning.

Drawing from the family systems literature, it is helpful to examine the family’s organization along the following six dimensions as described in Alderfer and Rourke (26):

1. 
   

   Structure and organization

   
   

   Like any group, a family has a structure, with roles and leadership positions developing within and between family members. Some family structures are hierarchical and organized with clear leadership roles for parents. Others are flat organizations with relative equality and shared decision-making among all members. Still others have reversed hierarchies in which children are essentially in charge and do a great deal of parental caretaking. Most families have a structure that, if not entirely adaptive, is still stable enough to allow them to meet the demands that they need to meet, given the individual challenges of each member. When critical illness strikes, however, roles and leadership structures may no longer work, or may change by necessity. For example, when parents spend multiple days at the hospital, partners and other family members function in new roles in order to maintain stability. Such new organization can result in role strain (27–28).

   
   
2. 
   

   Adaptability, or flexibility in leadership, roles, and relationship rules

   
   

   Family adaptability can range from extremely flexible (chaotic) to extremely inflexible (rigid). Examples of more chaotic family functioning may be characterized by multiple physical moves with inconsistent caretaking, or nonexistent schedules or routines in the home; examples of more rigid functioning include one parent making all decisions despite input from the other parent, or families being tightly organized around only one way of doing things. In the face of illness, a good balance of adaptability is necessary; families must be able to organize and implement consistent care routines and to structure their own participation in their child’s care (and to care for other family needs outside of the hospital), while also being flexible enough to adapt to changes in care that can occur with the often unpredictable changes in a child’s status, or the changes in medical teams that occur daily.

   
   
3. 
   

   Cohesion, or the emotional bonds between family members

   
   

   Cohesion can be represented along a continuum, from enmeshed to disengaged. Enmeshed families have weak boundaries between individuals; people speak for each other, and have difficulty separating their own needs or roles from those of other family members. In disengaged families, at the other end of the spectrum, individual family members may be more isolated and cut off from each other. In the face of medical trauma, family members may retain their way of functioning, or may be pushed more in one direction or another. A challenge in decision-making can easily emerge in enmeshed families, as individuals may “lose their voice,” and one person may (inaccurately) speak for another. In disengaged families, individuals may resist stepping in to make necessary decisions, or may seem less invested in or able to engage in the intimate nature of the care that is often necessary during the critical care experience.

   
   
4. 
   

   Communication, or the clarity of expression

   
   

   Communication patterns are a significant contributor to the sense of community in a family, and communication rules often dictate what can be spoken about in a family, how directly or indirectly family members can address an emotional situation, and how nonverbal messages, like care, comfort/nurturance, anger, and fear get expressed. Clearly, a family’s patterns in this area will affect how they manage an event like medical crisis, and individuals’ own trauma reactions will affect how communication patterns after the trauma get established. Awareness of a family’s level of comfort with a particular communication style can inform how the critical care team presents information to the family and conducts ongoing interactions.

   
   
5. 
   

   Affective environment, or the emotional tone of the family

   
   

   A family’s affective environment is often intricately tied to communication. How a family expresses and navigates strong emotion results in an overriding emotional tenor, which in turn continues to shape patterns of communication and care. When a life-threatening event intervenes in a family’s life, often the affective environment is shattered, and strong bursts of negative emotion (often fear) predominate. This can interact with a family’s communication style to shape adaptation in both positive and negative ways (26).

   
   
6. 
   

   Problem-solving ability

   
   

   A family’s problem-solving ability is defined as their goal-directed negotiation and task accomplishment—or the ability to come together as a group and get things done (26). For most families, most of the time, problem-solving is related to the normative tasks of mastering developmental milestones. For example, families must get their children through school, help them navigate social challenges, and provide food, shelter, and clothing. Clearly, families vary in their ability to come together and meet these tasks. Serious pediatric illness or injury, however, requires a more intense form of problem-solving, as families must make potentially life-altering medical decisions, while also managing to care for their family’s needs more generally.

In addition to these structural/organizational constructs, the child’s and the family’s current developmental phase (i.e, early childhood, adolescence, young adulthood) affects the family response to the illness or medical crises. In addition, medical crises can require a family to operate in a way that is inconsistent with a new or different level of development. For example, medical crisis can force families to pull together in order to respond to the needs of the ill child, much like families organize around a baby or toddler. Traumatic illness may, in fact, accentuate or greatly prolong the normal period of pulling together. Over time, this pattern of pulling together can become problematic, and can affect family members’ ability to become more independent and competent (e.g., a first grader may not have the experiences that support independence and may then be very frightened to go to school). Similarly, the traumatic illness of a teenager entering college often causes the postponement of this normative developmental shift. These out of sequence forces often derail normative developmental growth and can, over time, lead to significant role strain within and between family members.

Thus, it is essential to consider both the family life cycle as well as family structure when understanding psychological reactions to pediatric neurocritical care events, and to consider both how a family was functioning before the trauma, as well as how they have changed in response to the trauma. It must be emphasized, however, that changes in a family’s organization after a trauma, in and of themselves, are not problematic. If changes in a family’s structure or developmental level support the child and the parent’s ability to effectively manage the medical crisis, if medical decisions are being made appropriately and caretaking is adequate, and if the pattern results in no distress, there is no reason for concern or intervention. If, however, the child, parent, or team finds that important medical decision-making or caretaking is compromised, or that the child or family experiences distress or negative developmental progress, then intervention is appropriate.

We now consider more explicitly how family reactions interact with symptoms of PMTS by presenting a case study. We discuss family level constructs, consider signs of disruption faced by the family, and outline possible responses by health care professionals to optimally manage responses to the medical trauma.

■ CASE OVERVIEW

Jesse was a 15-year-old boy who lived at home with his mother, who was a single parent. He had an older brother who was living independently, and had never known his father. His mother’s extended family lived several hours from the family; neighbors and friends largely comprised the family’s local support network.

Jesse had been battling a slowly growing tumor in his chest for 2 years. After a long period of treatment resulting in stable disease, Jesse’s tumor grew quickly, spread to his spinal column, and had begun impeding his ability to breathe. He was intubated and placed on a ventilator emergently, and with great difficulty. Because of his fragile respiratory status, sudden and significant mental status changes, and changes in his ability to control his arms and legs, Jesse was admitted to the pediatric intensive care unit. Jesse’s mother was his sole caretaker, and was the only adult involved in Jesse’s care. Jesse remained in intensive care for more than 60 days, until his condition stabilized and he could be extubated and moved to a rehabilitation floor. Over the next several months, Jesse remained in the hospital, and was periodically admitted to the Pediatric Intensive Care Unit (PICU) for various issues, until he died, as expected, in the PICU.

We will present a discussion of various issues that occurred over the course of Jesse’s last several months of life and repeat PICU visits by reviewing the constructs outlined above.

■ DEVELOPMENT

Jesse was diagnosed with cancer as a young adolescent, which is normally a developmental time during which children become more independent and autonomous, and parents become less involved in caretaking. The demands of Jesse’s illness, however, required the family to organize more like the family of a younger child. Jesse’s mother had to remain involved in the high-stakes medical care and in Jesse’s caretaking, and because of his illness, Jesse could not participate in usual young adolescent social activities. His respiratory crisis and periodic mental status changes, requiring PICU care and resulting in hospitalization for the rest of his life, cemented this pattern; Jesse could not attend school, for example, and could not ride his bike or skateboard with his friends. Because of his medical status and his fear, Jesse had the normative emotional reaction of regressing; he often whined and cried in his bed, and began acting like a much younger child, refusing to complete self-care tasks that were well within his ability. His mother had to pay attention to intimate details of his personal care, including how much he urinated and what he ate, in ways that are not typical of a family at adolescence. As a result of all these factors, Jesse’s mother reacted by treating Jesse like a much younger child. She protected him from information, spoke for him, and overindulged him. Her own trauma was triggered when she heard Jesse’s cries and complaints, and this dramatically amplified her fear and helplessness, which in turn exacerbated her attempts to “make this better.” She therefore continued to “baby” Jesse, which allowed him to continue behaving more like a preschooler and less like an adolescent. He would beg nurses to do for him as his mother did, and throw a tantrum when people would not do for him what he wanted them to do.

Intervention: The following are some general guidelines for care when a family’s developmental level appears to be causing difficulties for them or for the medical team:

• 
  

  Normalize confusion and ambivalence about a child’s developmental needs, and the ways in which the demands of critical care illness are often inconsistent with what a child needs developmentally.

  
  
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  Partner with family (including child, when appropriate) to identify the roles a child and parent can take, and make those roles as developmentally appropriate as possible.

  
  
• 
  

  Develop new routines gradually, with attention to soothing worry, supporting growth, and avoiding judgment and punishment.

  
  
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  Coach children and parents through normative fears in developmentally appropriate ways (“I know this is hard/scary, but you can do it, and there is a team to support you”), rather than overindulging, overprotecting, or overfunctioning for them.

These guidelines shaped the team’s response to the patterns in which Jesse and his mother found themselves stuck. Once extubated, Jesse wanted to eat anything and everything he could get his hands on, and was not able to respect the team’s rules about what foods were safe given his limited swallowing abilities. Like a much younger child, he would demand a food, insist that his mother get it immediately, tantrum if she did not, and then, when the food arrived, insist that she be instrumentally involved in feeding him. Mom complied and, several times a day, was demanding that Jesse’s requested food be delivered immediately to his room. She would then sit on the side of the bed and feed him with a spoon. The team’s first step in addressing this behavior was to work with Mom to identify what Jesse could and could not do, reasonably. He could eat a limited list of foods, he could choose from those foods, and he could feed himself. Mom agreed with these abilities, and she worked with a team member to develop a food plan that gave Jesse more adolescentlike control and involvement. The team and Mom developed a menu of permissible foods, and Jesse could chose from items on this menu. Once foods were delivered, they were set up in a way that allowed Jesse to feed himself. At the same time, the plan had a role for Mom that allowed her to continue to feel that she was actively parenting Jesse through this time. While it took a few days of Mom and the team partnering together to coach Jesse through a few tantrums of protest, within a few days, Jesse was sticking to the menu, feeding himself, and approaching his feeding team to have discussions about new foods he wanted to add to the menu.

■ ORGANIZATION/STRUCTURE

In many single-parent families, especially during adolescence, the hierarchy of the family may become less pronounced, with a child and parent looking somewhat like peers, and less like a rule-making parent caring for a rule-following child. During serious medical illness, this hierarchy may become even less apparent, with parents and children often sharing a hospital room and adopting a level of intimacy that minimizes the hierarchy that may have been more typical of a family. In two-parent families, the hierarchy between one parent and the sick child may be erased, while the second parent becomes marginalized. In some families, a reverse pattern happens, and a hierarchy becomes more pronounced and extreme. In cases like this, parents may become the central decision-makers, marginalizing the child to be the obedient patient.

Common signs that the hierarchy has been disrupted in a way that is not adaptive for the family include:

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  Child trying to take care of the parent or protect the parent from news or information that may be upsetting.

  
  
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  Child trying to make decisions without appropriate parental input.

  
  
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  Parents abdicate decisions and are literally or figuratively absent from the bedside; child has to make decisions by default.

  
  
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  Parent appears flustered and unable to manage the medical demands.

  
  
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  Child appears very fearful.

  
  
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  Parent becomes hyper-in-charge, and excludes both medical staff and the child from decision-making or important discussions.

  
  
• 
  

  One parent, alone or with the child, becomes the decision-maker, while the second parent is marginalized and does not actively participate in the medical care or decision-making.

Jesse and his mother began the illness journey with a minimal level of hierarchy. Prior to his illness, Jesse was already known as “the man of the house,” and typically took care of several adultlike concerns at home for his mother. As he became ill (prior to the emergent PICU admission), his mother’s anxiety heightened, and Jesse, who looked older than his age, took on a primary role in managing his medical care. He made many of his own medical decisions, often attended medical appointments without his mother, and kept much of his suffering silent. Once in the PICU and newly intubated, Jesse clearly did not have the capacity to make decisions, but did everything in his power to communicate to his mother that he was in charge, and to protect his mother from “scary” information. This was confusing to the team, as Jesse also behaved in a regressed way, as described above. This kind of fragmented and seemingly incompatible set of behaviors is not atypical in families managing trauma. Though Jesse’s mother was initially by his bedside, responding to Jesse’s basic needs, she became increasingly overwhelmed by the medical events that triggered her own trauma, and began to avoid exposure to these triggers by pulling away. She found it increasingly difficult to make medical decisions and, over a few weeks, she began to anticipate when the physicians would enter the room, and would be absent during those periods. When present, she began to “absent” herself by becoming very disorganized and overly emotional, prompting Jesse to increase his protective concern for her.

Intervention: The easiest ways in which to intervene to establish appropriate hierarchy in families managing medical crises involve respectfully and calmly assigning family members roles and responsibilities consistent with an appropriate place in the hierarchy. Often, this kind of intervention will require a team member designated to be a partner for the parent and/or for the child, to provide him or her with resources that will support the newly assigned responsibilities. In addition, simply treating the parent and child as competent and conveying your expectation that they will be able to execute their roles can help the parent and the child to see each other as competent, and can support a shift in hierarchy. Exposing families to groups of other families managing similar conditions (e.g., parent support group; teen group) can give family members role models and peers to help them take steps toward a more helpful family organization.

For Jesse, the first intervention was to give his mother a specific job at the bedside. She was given two daily responsibilities: to help Jesse complete his menus, and to make a list each morning of the issues that Jesse wanted to discuss with the medical team. This “job” gave the family the task of discussing medical information, left Jesse with age-appropriate autonomy, but also included his mother in the conversation in a manageable and less scary way. It was not required that she be present for the conversation with the medical team, only that she help Jesse make his list of concerns each day. As she experienced some relief in knowing the concerns, and some confidence and competence in being able to tolerate the worry of knowing the concerns, she did begin participating in the care more effectively. As Jesse experienced his mother being able to handle information, he began being less protective and more inclusive of her in his overall care and decision-making. Jesse’s mother would still sometimes become emotionally overwhelmed. However, with some very gentle coaching, she learned to communicate this to the team and to step out, allowing the team to work more directly with Jesse at these times so that he did not have to “cover” for her.

■ ADAPTABILITY

During a medical crisis, families must adapt in many ways. They must adapt to the emotional volatility of having a critically ill child, to the hospital realities of changing medical team members and rapidly changing medical needs and treatments, and to the practical realities of managing their child’s medical care while also attending to the regular issues of life (e.g., managing work obligations, caring for other children, paying bills, getting themselves fed and housed, etc.). Clearly, families will manage most successfully when they balance consistency with flexibility. This kind of balance, however, requires solid problem-solving, good support, and emotional stability, all of which can be in short supply when one’s child is in need of critical care. Being too consistent, or becoming anchored or fixed around rigid patterns of response, is one way in which adaptability challenges can emerge during the critical care experience. Rigid adherence to family and treatment routines can help parents, and even the child patient, feel a sense of control. When clinical needs demand quick changes, however, these families may become flooded with anxiety; changing up the routine may evoke intense fear, which can lead to opposition from both parents and children.

Being anchored at the other end of the adaptability continuum can be equally unhelpful. When families are traumatized by an illness or injury, they may be flooded with high anxiety and no sense of organization. They may abandon their routines and sense of order, and be unable to construct new routines to meet the needs. The result can appear to be chaos. Parents may have difficulty executing (or even understanding) care plans, they may have no predictable routines for being at the bedside, attending to their own needs, or communicating with the team. They may not show up at the bedside, or may appear too emotionally overwhelmed to participate in care when they do show up.

Some families, including Jesse and his mother, experience challenges at both ends of the continuum. Early in Jesse’s care, and each time there was a major change in his condition, plan of care, or primary care team, his mother became completely chaotic and disorganized. Her attendance at the bedside was unpredictable, making it difficult for the team to execute care and make decisions, and when she was there, she was unable to organize herself to be a good support to Jesse. At other times, Mom became fully and rigidly organized around Jesse’s routines. At times, this was helpful, and appeared to ground both her and Jesse. At other times, this was problematic. Jesse had to be changed in exactly the same way, always by the same nurse; he had to have his medications at exactly the same time, down to the minute. Slight changes in those routines were very difficult for Mom to tolerate. Changing the time or dose of a medication often precipitated an emotional crisis for Mom, and required several hours of team discussion to resolve.

Intervention: A few basic principles can help a team guide families to the middle of the adaptability continuum, promoting the ability of families to execute care and personal routines, while also maintaining the ability to change up those routines when necessary. Integrating good peritrauma care into family interactions can help. Specifically, helping families to feel a sense of safety, control, and information can help to reduce trauma-related anxiety that may exacerbate challenging family reactions (14). If families feel that they have access to clear information and feel that they have reasonable control over even some small aspects of care, they are more likely to be able to tolerate changes. Teams can help to maximize a sense of safety, control, and information by:

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  Preparing families at the outset of a critical care experience to expect multiple changes, and letting families know that team members will help them develop routines to manage the changes.

  
  
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  Providing clear, crisp information to parents each time there is a change in care, and taking a few moments to be sure they have understood it.

  
  
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  Providing as much predictability as possible by helping families and children understand the general routines of a day in the PICU (e.g., giving information about times at which the doctors usually round, the meals are delivered, the nursing staff changes).

  
  
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  Helping families to develop simple routines to manage their involvement in a child’s care (“Here is how you can help us change your son”), as well as taking care of their own needs (e.g., prompting parents to set up schedules for being at the hospital, getting their own meals, communicating with others in their family).

Jesse’s mother was strongly encouraged to set up a schedule for when she could be at the hospital, and was given a way to communicate with the nursing team when she had to change that schedule. Once Jesse was stabilized initially, a daily schedule of therapies was posted on his wall so that he and Mom could have a sense of predictability to their days. Changes were communicated by the same team member, as much as was possible, in a clear way and with as much notice as possible to Mom and Jesse. Over time, a sense of routine developed, and the rigidity and chaos extremes became less common.

■ COHESION

As described above, a family’s patterns of involvement and closeness can support or undermine development. Preexisting patterns of cohesion that may have been functional for a family prior to an illness or injury may become less helpful during a critical care experience. Most often, issues related to family closeness emerge when patterns of connection between family members are not concordant with the developmental stage of the children or the family, and/or when parents have difficulty understanding that their own reactions to the events are separate and distinct from the reactions of their child, and vice versa. Mothers of babies, for example, may be traumatized considering that their babies are being emotionally scarred for life by the medical experience of critical care. While the experience is no doubt emotionally traumatizing for the mothers, it is likely to be less so for the youngest children.

For Jesse, the demands of his illness, as well as his family’s preexisting patterns, resulted in an organization typical of a family with a much younger child. In many ways, Mom appeared to be overinvolved with Jesse, and violated his own autonomy by speaking for him, responding for him, and assuming that her emotional reactions were the same as his emotional reactions. Mom was reluctant to allow Jesse to take an age-appropriate role in learning about and managing his own medical issues. Jesse, a partner in this relational process, did the same with Mom; he assumed that he knew what her emotional reactions would be, and therefore made decisions to try to protect or shield her from information as a result.

For example, Jesse’s mother, understandably devastated by Jesse’s prognosis of having life-limiting disease, had insisted that he be protected from this information. After a surgery confirmed the prognosis, she and the medical team negotiated for nearly 2 weeks over whether or not he should be told. Mom could not understand that Jesse might not only be able to tolerate this information, but that open and honest discussion might relieve him of a burden and result in better care. Once it became clear that a discussion had to happen, Mom attempted to prepare for this discussion by calling the care team, including a psychologist and a social worker, to the bedside, and then, while crying, crawling into bed with her son as the physician began to speak.

Intervention: All of the intervention ideas listed above will also help in managing appropriate emotional connections between family members, while also promoting appropriate differentiation between family members. Three guiding principles may help:

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  Prepare children and parents for the idea that while each will have a strong reaction to critical care, their reactions are likely to be different. Different things will scare them, different things will be hard for them, and each will surprise the other during the process. Simply providing this information can attune parents and children to look for differences, rather than to assume they are all having the same experience.

  
  
• 
  

  Develop age-appropriate tasks and roles for parents and for patients, and support families in the execution of these routines.

  
  
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  Help parents and children stay connected to roles and important others outside of the critical care experience. Parents can be encouraged to take brief breaks from the bedside, to attend to their other children or to each other, or to go to a hospital-sponsored group or support room. Children can be encouraged, as they are able, to communicate with siblings or friends, or to engage in developmentally appropriate activities or interests, even if they are only watching television or playing video games.

For Jesse, all of the team’s work around establishing routines and engaging Jesse and Mom in ways that allowed Jesse to be a teenager helped to balance the level of Mom’s involvement. Often this process required nuanced work. For example, when preparing Mom to be part of the conversation in which Jesse would be told of his prognosis, the team was careful to craft roles for Mom and others on the team that would allow Mom to take a parental role while allowing Jesse age-appropriate information. When Mom climbed tearfully into bed with her son to prepare him for the conversation, a team member privately, gently, and respectfully reminded Mom that Jesse would have his own reaction, and that she was demonstrating her reaction by climbing into bed. When encouraged to be his mother, she quickly acknowledged this, and stepped out of the bed, assuming her role by the bedside, more calmly. During the conversation, Jesse indicated that (as the team suspected) he already knew his prognosis (“I’m not stupid, you know”), but that he had not felt free to discuss it, or his very strong, and developmentally appropriate, reactions to it. The conversation showed both Jesse and Mom that they had separate experiences, with quite a bit of overlap, and this understanding opened up a new way for them to talk about the medical situation.

■ COMMUNICATION AND PROBLEM-SOLVING PROCESSES

Both communication and problem-solving processes are mechanisms that contribute to how a family is organized, and how they maintain that organization. In Jesse’s family, communication was less than effective, largely because the overwhelming cohesion in the family left little room for real discussion about issues. Both Mom and Jesse believed they knew how the other felt, and spent most of their energy protecting each other from these imagined responses. Likewise, problem-solving was limited by the way in which the family bounced from rigidity to chaos.

Intervention: As was illustrated above, most interventions to address the issues of family organization involve using communication and problem-solving as tools. By helping families to communicate differently with each other and with the team, and by helping to develop new, consistent, and flexible problem-solving processes, teams can help families minimize the effects of trauma on their organization during the critical care experience (1,2).

■ AFFECTIVE ENVIRONMENT

The affective environment or emotional climate of a family can be an indicator of how families are adapting, and can help teams decide when intervention is necessary. While no one would expect the emotional climate of a family with a child in critical care to be rosy, there are clearly times when the climate is more strained than is typical, or when levels of emotion, most often trauma/anxiety, interfere with care. For Jesse’s family, the emotional climate of this family was unpleasant, and despite their intense connection to each other, Mom and Jesse were both feeling terrible, but quite privately. Their rigid protection of each other did not allow either of them to process or express their own sadness and worry. They were often resentful of each other and unable to count on each other’s support, leading them to feel alone and isolated. In short, the affective environment was strained, and in addition to feeling worried, sad, and being tearful, they were each often irritable and short-tempered with each other and with the medical team. No one’s needs were being met.

Intervention: A family’s affective environment is both a result of their organization, communication, and problem-solving processes, and a contributor to those same processes. As such, interventions that support appropriate organization, cohesion, and adaptability, as listed above, are likely to lead to a more adaptive affective environment. While in critical care, an affective environment may never feel casual, light, or sunny. However, honest communication patterns, the freedom to adapt to changes and respond to scary situations without constraint, will contribute to a more honest and open environment that will foster each individual’s and the family’s mastery of the situation.

■ CONCLUSION

There is never a good time for a child to experience a neurocritical trauma. The child, family, and often health care team are inevitably challenged in multiple aspects of functioning when a child ends up on a critical care unit. A systems-informed framework for understanding the impact of the illness and resultant trauma on the child, family, and health care team helps to provide a care framework that is consistent, assuring, developmentally appropriate, and, as a result, medically optimized. Understanding a child’s neurocritical status in the context of a family’s structure and organization, adaptability, cohesion, developmental status/trajectory, problem solving, and affective environment are believed to enhance care in the short term and optimize psychosocial adjustment in the long term. It promotes a framework that depathologizes traumatic reactions and helps the patient, family, and health care team better understand their thoughts, feelings, and behaviors. A trauma-centered, systems-informed framework also provides concrete and accessible interventions to assist with optimal adjustment throughout the cycle of the trauma and illness. As a result, families are better able to adapt to the ever changing realities inherent in the critical care environment, teams and families are better able to participate in mutually informed medical care, and there is a pathway toward developmentally informed adjustment as the crisis resolves.

While nurses, physicians, and other critical care team members can occasionally attend to the constructs and processes outlined in this chapter, these issues can fall by the wayside when emergent high-stakes medical issues are present. Consistent attention to these issues, though hard to implement, will, however, reduce the barriers to providing medical care by developing more resources within the family and less conflict between the family and the team. One solution to this dilemma is to have a behavioral health provider colocated in a critical care unit. This provider can assist patients, families, and care team members in adopting a trauma-centered, systems-informed framework, develop and guide interventions, and assess outcomes. As an integrated member of the health care team, the behavioral health provider can assess the psychosocial status of new patients and families, monitor adjustment and adaptation throughout the hospital course, facilitate entry into a less intensive unit or the community, and maintain follow-up care as the patient or family members attempt to reestablish a new chapter in their lives. The behavioral health provider can also provide ongoing liaison to the medical team and thereby facilitate the incorporation of systems-based and trauma-informed care into their training. For example, over time, case specific consultation, psychosocial rounds, and well-planned didactics can help a critical unit care team develop greater sophistication in the medical and psychosocial care of children. The medical cost offset and value added of integrated behavioral health providers also contribute to overall patient quality and safety.

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