Decreasing Parental Stress in the Pediatric Intensive Care Unit

Nurses and parents have different perceptions about what aspects of the pediatric ICU are stressful and which interventions are helpful. The author describes the most common needs and stressors of parents in the pediatric ICU and the interventions that may decrease stress.The pediatric intensive care unit (PICU) has long been recognized as an emotionally charged and highly stressful place. As early as 1972, Hay and Oken1 described an ICU as “a massive array of stimuli [with] an atmosphere not unlike that of a tension-charged war bunker.” Children admitted to the PICU bring with them families from many different backgrounds, ethnicities, cultures, religions, and socioeconomic strata. Admission of a child to the PICU may be one of the most stressful events for parents, because the outcome is often uncertain, the procedures are often painful, and intense emotions of anxiety, sadness, and anger are in constant flux. Indeed, one mother described her feelings during her daughter’s illness as follows2:In addition, according to several studies,3–6 nurses and parents have different perceptions about what is stressful about having a child in the PICU. And, many interventions that nurses thought were helpful in reducing parents’ stress were, according to the parents, not helpful. These findings suggest that a gap exists between how many PICU nurses practice and what the evidence shows may be helpful for parents.Although family-centered care is routine practice in the PICU at the Children’s Hospital of Austin in Texas, my colleagues and I thought that some areas of care could be improved. We also recognized that individual nurses had different practices in how they approached families admitted to the PICU. Therefore, the goal of the project reported here was to communicate to bedside nurses the most common needs and stressors of parents in the PICU and the interventions that may decrease stress. To determine best practices, I examined the literature on parental needs and stressors in the PICU and on interventions to reduce stress.During the past 20 years, multiple investigators3–17 have described parental needs in the PICU. Throughout these studies, parents consistently rated their highest needs as having unrestricted access to their child and receiving honest, straightforward information. Parents had a particular interest in being allowed to be with their child during procedures,3,9,11 and they also wanted explanations of tubes and equipment at the child’s bedside and discussion of the child’s prognosis.3,14 Another consistent need was for parents to be able to participate in their child’s care.14,15Commonly identified parental stressors included the loss of the parenting role,14 uncertainty over the child’s outcome,9 being separated from the child,9 and feeling that the quality of care the child was receiving was poor.13 Also, not understanding information provided by medical personnel was a stressor,9 as well as being told rather than being asked what was best for the child.2In a study of parental needs in the PICU, Kasper and Nyamathi15 identified 280 distinct needs expressed by parents. Clearly, many needs and stressors overlap and have similar themes. Table 1 summarizes the major needs and stressors described in the literature.The timing and severity of illness appear to be significant stressors for parents. The majority of admissions to a PICU are unplanned. In a study by Eberly et al,7 parents whose children had unplanned admissions were more stressed than were those whose children had planned admissions, such as semielective surgery. Huckabay and Tilem-Kessler8 think that the uncertainty of unplanned admissions and the vast number of tests and procedures done in a brief time are key factors in this phenomenon. In a study on the effect of the severity of illness on parental stress, Haines et al5 compared stress in parents whose children were intubated with stress in parents whose children were not intubated. The results indicated that the parents of intubated children were more distressed by painful procedures performed on their children and that parents of nonintubated children were more distressed by the behavioral and emotional responses of their children. However, the investigators did not address parental presence during the painful procedures.Several researchers3–6 have compared nurses’ and parents’ perceptions of what is stressful about having a child in the PICU. Generally, nurses and parents have different perceptions about what is stressful and what interventions are helpful. For example, Miles and Carter3 found that although most nurses recommend that parents go home to rest, only 22% of parents thought that this recommendation was a helpful coping strategy. Also, Haines et al5 found that staff personnel were concerned with how information was communicated and thought that parents were concerned with this factor as well. However, parents were not as concerned with how the information was communicated as they were with the honesty and accuracy of the information. In another study, Johnson et al6 noted many discrepancies in how nurses and parents ranked stressors. For example, nurses ranked the loud sounds of monitor alarms as one of the most stressful things for parents, whereas parents rated this concern much lower. Instead, parents were more concerned with how to best help their child at a time when their traditional role as parents was altered.6 The findings from these studies3–6 suggest that nurses should not simply assume that they understand the needs and stressors of parents in the PICU.In other studies,11,14 investigators compared maternal stress with paternal stress. Miles et al11 reported that both mothers and fathers found the overall PICU experience equally stressful. Fathers identified the inability to visit and the inability to help the child as most stressful, whereas the mothers identified separation and fear as the most stressful. Fisher14 reported similar findings except that mothers ranked most needs, such as knowing what was being done to their child, as being of greater importance than did fathers. Therefore, mothers and fathers differ in what they find stressful, although both find the experience as a whole equally stressful.In 2002, Board and Ryan-Wenger18 published the first prospective study in which long-term effects of PICU hospitalization on family functioning was examined. Three groups of families were studied: those with children in a PICU, those with children in a general care unit, and a comparison group of parents with nonhospitalized ill children. The families in the study were followed up for 6 months after the children’s illnesses. The results indicated that parental stress lingers long after hospitalization and that families perceive themselves as more dysfunctional than before the hospitalization.In more recent study, Balluffi et al19 examined the prevalence of both acute and posttraumatic stress disorders in parents whose children were admitted to a PICU. The investigators found that 32% of the 272 parents met the criteria for diagnosis of acute stress disorder and that 21% of the 161 parents who completed follow-up met the criteria for posttraumatic stress disorder. Although the long-term effects of parental stress in the PICU are just beginning to be determined, these studies18,19 may serve as a warning that the effects of PICU admission on patients’ parents and other family members may be more severe than anticipated.After examining the literature, I realized that many of the assumptions nurses make about the needs and stressors of parents are inaccurate. I thought that this gap could be addressed by an educational effort to ensure that nurses were aware of the research. However, determining what nurses can do to actually decrease the stress parents experience during a child’s PICU admission was more difficult.Studies20–22 in which formal interventions to decrease parental stress were examined have been somewhat limited. However, in nearly every study, the researchers proposed basic nursing interventions on some level. Many of these interventions are fundamental to pediatric critical care nursing. Following the approach used in other process improvements, I “bundled” the interventions into a time-sensitive algorithm (see FigureF1). A “bundle” is a concept developed by faculty at the Institute for Health-care Improvement that describes a collection of scientifically grounded interventions aimed at improving outcomes.23 When smaller interventions are placed into a larger group, clinicians are more likely to implement all of the interventions rather than just a few of them. The institute has used this concept to develop bundles to prevent ventilator-associated pneumonia and to treat sepsis.23In the following sections, I describe the content of the algorithm in more detail and particular studies that support the interventions.With the admission of their child to the PICU, all parents will experience stress to some degree, although families with unplanned admissions experience higher levels of stress than do families with planned admissions.7,8 Tools are available to measure parental stress (Parental Stressor Scale Pediatric Intensive Care Unit11) and measure anxiety (Multiple Affect Adjective Check List,8 Spielberger’s State Anxiety11). These tools contain between 20 and 62 items,8,11 and it is probably not practical to use them on a daily basis to assess parental stress. Instead, bedside nurses can rely on parental behaviors as clues to the level of anxiety.Huckabay and Tilem-Kessler8 described the patterns of stress of parents whose children are admitted to a PICU. They found that parents had the highest degree of stress, described as “near-panic levels,” on the day of admission. The anxiety levels decreased on days 2, 3, and 4 to a moderately high level.Behaviors that indicate a person is at the near-panic stress level8 include a stunned look, staring, difficulty concentrating, inability to ask questions, and forgetfulness. These behaviors are incorporated into the algorithm to indicate increases in parental stress, which alert nurses to the need for more intensive interventions. Of note, other reasons (eg, lack of sleep or hunger) could account for these behaviors. Bedside nurses must use their nursing judgment in determining when a parent might benefit from the expertise of other support staff in the unit, including clinical nurse specialists, nurse practitioners, case managers, and social workers.Although all families who enter the PICU will experience stress, the degree of stress is certainly influenced by factors other than the child’s hospitalization.24 Therefore, bedside nurses should assess each family for factors that may increase or decrease the stress of hospitalization. For example, a family of 7 without a home or adequate social support may find the hospitalization much more stressful than does a family of 3 who has extensive social support. However, this information is only obtained by asking, so a thorough assessment of the family as a whole should be performed at the time of admission to the PICU.Including questions about a family’s needs, needs, needs, and of social support on admission can family assessment is also helpful to the admission is a family’s first experience with hospitalization. For families who have the nurse should ask them for their perceptions of those events and to which coping were most helpful for them. 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