Published online December 1, 2006
PEDIATRICS Vol. 118 Supplement December 2006, pp. S203-S218 (doi:10.1542/peds.2006-0951B)
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ARTICLE


Impact of Pediatric Critical Illness and Injury on Families: A Systematic Literature Review

Marysia Shudya, Mary Lihinie de Almeidab, Susan Lyc, Christopher Landon, MDd, Stephen Groft, PharmDe, Tammara L. Jenkins, MSN, RN, CCRNf and Carol E. Nicholson, MDf

a University of Minnesota Medical School, Minneapolis, Minnesota
b Medical College of Georgia, Augusta, Georgia
c New York Medical College, Valhalla, New York
d Pediatric Diagnostic Center, Ventura County Medical Center, Ventura, California
e Office of Rare Diseases, Office of the Director
f Pediatric Critical Care and Rehabilitation Research, National Center for Medical Rehabilitation Research, National Institute of Child Health and Human Development, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland


   ABSTRACT
TOP
 ABSTRACT
BACKGROUND
 SIGNIFICANCE
 METHODS
 RESULTS: SYSTEMATIC LITERATURE...
 DISCUSSION, LIMITATIONS, AND...
 REFERENCES
 
OBJECTIVE. We sought to inform decision-making for children and families by describing what is known and remains unknown about the impact of childhood critical illness and injury on families. This report also was designed as a tool for research planning and design so that meaningful studies are performed and duplication is avoided.

DESIGN. After a national scholarship competition and the identification of 3 medical student summer scholars, a literature search was conducted by using the National Library of Medicine and a PubMed keyword search system at the National Institutes of Health.

RESULTS. A total of 115 reports were reviewed and assigned to the 5 following categories characterizing the impact of pediatric critical illness/injury on families: stressors, needs, specific domains (psychological, physical, social), coping, and interventions. The reports reviewed indicate that pediatric critical illness and injury is stressful for the entire family. The effects on parents, siblings, and marital cohesion were variably described. Needs of family members (eg, rest, nutrition, communication) were identified as being unmet in many studies. Permanent impact on siblings and marital relationships has been considered detrimental, but these conclusions are not adequately quantified in presently available studies. Reviewed reports minimally investigated cultural diversity, effects on fathers versus mothers, siblings, socioeconomic status, and financial burden. Studies were often anecdotal and included small sample sizes. Methodologic limitations were numerous and varied and seriously narrowed the significance of the studies we reviewed. The reports that we evaluated were largely limited to those of English-speaking families, white people, and married mothers.

CONCLUSIONS. Future research should use more rigorous methods in the measurement of impact of childhood critical illness and injury on families. Families of critically ill and injured children would benefit from the practitioners of pediatric critical care acquiring enhanced knowledge and sensitivity about famliy communication and dynamics.

Key Words: critically ill children • siblings • injury • family impact • PICU

Abbreviations: NIH—National Institutes of Health • PSS:PICU—Parental Stressor Scale: Pediatric Intensive Care Unit • PTSD—posttraumatic stress disorder

Picus for critically ill and injured children are expanding in number and size.1 A 1998 estimate that 200 children per 100 000 in a population will require intensive care annually2 is probably conservative. Pediatric critical care services support children admitted with life-threatening medical conditions, as well as postoperatively after cardiovascular, orthopedic, neurosurgical, microvascular, plastic, and reconstructive procedures. Innovations in pediatric surgery, hematology/oncology, and state-of-the-art advanced life support techniques have expanded treatment options for critically ill infants and children. Mortality rates in childhood critical illness and injury have plummeted, and death rates in PICUs are uniformly low even for tertiary units at 1.5% to 8%3 (see Appendix 1).

This targeted change in mortality was described in the Healthy People 20104 agenda as the reduction in deaths of infants, children, and adolescents from all causes. Aggressive programs of education and training have been implemented to prevent deaths resulting from violence, drowning, poisonings, and trauma. Basic and advanced professional training in the techniques of life support has been widely instituted with the goal of reducing child deaths resulting from shock of traumatic and septic origin, head injury, and cardiorespiratory failure.


   BACKGROUND
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 ABSTRACT
 BACKGROUND
SIGNIFICANCE
 METHODS
 RESULTS: SYSTEMATIC LITERATURE...
 DISCUSSION, LIMITATIONS, AND...
 REFERENCES
 
Young people (from birth to adulthood) with special health care needs represent a large segment of the population in our PICUs. One recent study of PICU demographics reported that 45% of children admitted emergently had preexisting special health care needs, and 3% were already technology dependent.5 In the remaining 55% of urgent admissions in previously healthy children, one would expect that many will have special health care needs and/or be technology dependent by the time of PICU discharge. In addition, when one considers the postoperative population in the PICU, it is evident that the majority of children in PICUs are characterized by the following long-term special health care needs: chronic illness, technology dependence, and developmental disability.3,6

Survival is no longer an adequate measure of pediatric critical care practice, because mortality is a rare event. Morbidity and disability in the rapidly growing cohort of survivors remain poorly quantified. The experience of the death of a child, a common event in much of the world, has become rare in the United States. Indeed, Newachek et al7 estimate that most pediatricians will have 3 or fewer children die during a practicing lifetime. These same authors report that general pediatricians provide inpatient care for only small numbers of children annually.

According to Centers for Disease Control and Prevention statistics, 45054 children and young adults died at between 1 and 24 years of age in the United States in 2002 (see Appendix 1, drawn from Centers for Disease Control and Prevention data), the majority as a result of accidents, homicide, or suicide. A smaller number died as a result of medically intensive illnesses such as cancer (7.1%), congenital anomalies (3.2%), and heart disease (3.2%).8 Approximately 5000 children die each year as a result of life-limiting chronic disorders such as neurodegenerative diseases, cystic fibrosis, muscular dystrophy, and HIV-1.9 The slow downward spiral that precedes the final admission may exhaust family finances, relationships, and coping abilities.


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  		APPENDIX 1 Leading Causes of Death and Number of Deaths According to Age: United States, 1980 and 2002

 
The impact on siblings and marital relationships is not described in large, detailed studies, but it is widely considered to be substantial and detrimental.10–12 This is a subject of considerable interest in the pediatric palliative care literature.13 Substantially fewer studies are found about the impact of the disability and chronic illness on families that more often characterize child health after PICU discharge. To understand the impact on families of childhood critical illness and injury we performed a systematic literature review.

Family structures are increasingly recognized as heterogeneous, thereby adding a varying dimension to the impact of critical illness and injury. Examples include single-parent households, "blend" families created by new marriages and/or domestic partnerships, multigenerational families, gay/lesbian caregivers, foster and adoptive homes, and transgenerational models, in which grandparents, aunts, uncles, and older siblings act as primary caregivers. Cultural diversity and differences in stability of family units over time are to be expected.14 For instance, families may be thousands of miles away from their traditional support systems and spiritual resources because of political and social upheaval and immigration.15

An ICU stay is characteristically volatile for critically ill children, caregivers, and parents; dramatic swings in illness trajectory toward both deterioration and recovery are common. The impact of these events on family dynamics, stress, and coping has been the subject of some reports, especially in the nursing and sociologic literature. Although most studies are small and many are anecdotal, a common theme emerges: critical illness in childhood is a source of distress not just for the child in the PICU but for the entire family.16,17


   SIGNIFICANCE
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 BACKGROUND
 SIGNIFICANCE
METHODS
 RESULTS: SYSTEMATIC LITERATURE...
 DISCUSSION, LIMITATIONS, AND...
 REFERENCES
 
Commonly, primary care pediatricians supervise the care of children with multisystem residual disability, activity limitations, and technology dependence.18 Children with complex regimens of care and multiorgan system disability are returned to the care of their families and medical home providers after an ICU stay, too often with alarmingly little provision for support.19 This integration of children with disability and special health care needs into general pediatric practice is expanding as the population of disabled children grows. Using a systematic literature review, we sought to inform decision-making for this growing population of children and families with special health care needs after childhood critical illness or injury. We also sought to describe research gaps in which application of scientific and analytic methods might inform and ultimately improve care of children with complex residual special needs.

The systematic literature review was conceptually organized around the elucidation of stressors experienced by families, the needs described by families, and the overall family impact of childhood critical illness and injury. We found published reports describing the impact on these families in the psychological, physical health, and social arenas of their lives. In addition, we sought to review and report on the literature that describes family coping under these circumstances, especially where focused, professional interventions have been demonstrated to ameliorate untoward family impact.


   METHODS
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 ABSTRACT
 BACKGROUND
 SIGNIFICANCE
 METHODS
RESULTS: SYSTEMATIC LITERATURE...
 DISCUSSION, LIMITATIONS, AND...
 REFERENCES
 
A national competition was conducted in the spring of 2005 to identify scholars who would evaluate the literature about the family impact of childhood critical illness and injury. Every Association of American Medical Colleges–accredited academic medical institution within the United States was contacted via its dean of students/student affairs. The competition yielded 3 summer scholars, Ms de Almeida, Ms Ly, and Ms Shudy (medical students who began their scholarship in the summer between their first and second years of studies), at the National Institutes of Health (NIH), Office of Rare Diseases, and the National Institute of Child Health and Human Development (National Center for Medical Rehabilitation Research, Program in Pediatric Critical Care and Rehabilitation Research) in Bethesda, Maryland.

The literature search was conducted by using the National Library of Medicine, accessed through the NIH library system. PubMed, a computerized database containing articles published between 1966 and 2005, was the primary search engine used. Citations retrieved were relevant to family adjustment and pediatric critical care. A spectrum of keywords was entered in different combinations and included "child," "illness," "impact," "families," "chronic," "critical," "experience," "siblings," "effects," "pediatric," "care," "parents," "PICU," "teenagers," "disability," and "trauma." Articles relevant to 5 areas of family impact were identified: stressors, needs, impact, coping, and interventions. Reports were reviewed and categorized by the scholars. We excluded literature about the effect of child death in isolation from critical illness and injury, because there are many extensive reviews of this subject.13,20–23 Additional perspective on the dynamics of health care workers and critically ill children and their families was gained during biweekly rounds at the Children’s National Medical Center PICU in Washington, DC, a 24-bed unit with a census of >1400 patients per year.

The literature was reviewed and summarized in tabular form by the scholars. Supervision was provided by a pediatric intensivist (Dr Nicholson). Additional knowledge was gained through interaction with a pediatric pulmonologist who serves as medical director of a multidisciplinary service for children with special health care needs (Dr Landon).


   RESULTS: SYSTEMATIC LITERATURE REVIEW
TOP
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 BACKGROUND
 SIGNIFICANCE
 METHODS
 RESULTS: SYSTEMATIC LITERATURE...
DISCUSSION, LIMITATIONS, AND...
 REFERENCES
 
Stressors Identified in Families of Critically Ill Children
The admission of a critically ill child to the PICU imposes immense burdens on parents, siblings, and other family members.24,25 We reviewed 13 studies that specifically addressed stressors that negatively affected the families of critically ill children (Table 1). The milieu of the ICU, the presence of numbers of desperately sick children, their families and caretakers, and the intensity of the PICU personnel are understandably alien to shocked and grieving parents. The continual presence of bright lights (without respect to diurnal cycles) and the unceasing vigilance of the PICU staff present an intimidating environment.26,27 To inform pediatric critical care practice, several investigators sought to describe specific stressors and subsequently develop appropriate interventions.28


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  		TABLE 1 Systematic Literature Review: Stress Factors and Outcomes in Pediatric Critical Illness

 
Kasper and Nyamathi defined stress as "circumstances that place physical or psychological demands on the individual and the overall emotional reactions experienced by the individual or family."29 Miles and Carter24 classified the identified sources of stress experienced by parents of children in a PICU as situational, personal, and environmental; they developed the Parental Stressor Scale: Pediatric Intensive Care Unit (PSS:PICU) instrument.24 This clinical assessment tool evaluates stressors as perceived by parents30 and has prompted subsequent analytic studies of PICU family stress.26,31–37 As shown in Table 1, studies using the PSS:PICU indicate that the most severe parental stress is role alteration.25,26,37 This is understood as the sense of helplessness in parents who are accustomed to control in providing safety and advocacy.27 Other identified stressors include alterations in the child’s appearance, machine alarm sounds, nursing procedures, and communication difficulties with PICU staff.24,38

Most reports of parental stress after emergent PICU admission indicate that early anxiety levels are elevated to near panic. These levels subsequently decline and stabilize.39,40 A positive correlation between the number of invasive procedures and the level of parental anxiety was observed. Because such procedures correlate with acuity, this is an expected finding.39

Parental sensitivity to environmental stimuli in the PICU becomes less acute over time, whereas dimensions such as staff communication and behavior become stronger determinants of parental stress.26,37,39 Parental needs may change as novel equipment and procedures become more familiar. At some point then, parents focus on the decision-making process including interaction with the hospital staff and learning about the child’s care.27

In describing parental stress levels, researchers have reported that parents who experienced an unplanned PICU admission had higher mean scores on all stress dimensions than those whose children were admitted electively.26 Mothers regarded the PICU experience as more stressful and scored higher stress levels (on PSS:PICU measures) than fathers in one study31 and were reported as more stressed than fathers in another study.41 However, other authors have found that mothers and fathers seem to experience the same level of stress elicited by different stimuli.42 Other researchers have found no significant difference in stress levels between mothers and fathers.35,39,43 In general, there were disproportionately small numbers of participating fathers in the study samples.42,43

Two studies concluded that parents’ and PICU nurses’ perspectives on parental stressors have significant discrepancies. Parents reported feeling more stressed by their child’s behavioral and emotional response, but nurses expressed greater concern about staff communication.33,43 These differences between staff and parental perception of characteristic stressors were the subject of only a few reports.

Landolt et al44 reported that stress was positively correlated with higher socioeconomic class. Loss of parental control in relatively advantaged parents may produce more acute stress-level elevation, but this remains unproven. Another group reported that parents of intubated children were found to be more distressed by painful procedures, as compared with parents of nonintubated children, who were more distressed by the behavioral and emotional responses of their children. This result was despite the underlying difference in sedation and consciousness.36

Few studies have investigated stress in healthy children when a sibling is hospitalized with critical illness or injury. Those we reviewed concluded that the main sources of stress in siblings were changes in parental behavior and care by a substitute caregiver. Reviewed reports indicate that there is no significant correlation between the age or gender of siblings and level of stress.45,46 The authors of one study found higher stress levels in siblings who visited the PICU daily, implying that repetitive contact with distressing content may be more anxiety-producing.45 Older siblings in households with a child in the PICU may assume parental responsibilities,47 and the effect on their development remains understudied.45 In other reports, concentration of the single caregiver on the critically ill child resulted in age-inappropriate adult responsibilities for siblings and relative neglect of their needs.46,48

Kleiber et al49 reported that the needs of siblings of critically ill children revolve around the maintenance of a familiar lifestyle. Needs for siblings included family cohesion, distraction from the immediate crisis, hospital visitation, and developmentally appropriate information. Assessment of sibling developmental levels ideally should provide the platform for information and level of detail about a critically ill brother or sister. Because the parents are distracted, availability of such assessment and communication for siblings remains problematic. Symptoms of depression in siblings have been reported as a prominent psychological finding.48 Worry and fear about the sibling’s own health and safety and detachment from the critically ill/injured child are typical findings.10 Feelings of guilt, isolation, and relative unimportance in the family are reported as well. Overt resentment or rivalry toward the ill child who is receiving more parental and social attention is also common.12,50,51

Needs of Families of Critically Ill Children
Family-member reactions include anguish, helplessness, and aggravation. If unresolved, such responses may adversely affect the well-being of the entire family.52 Most pediatric critical care professionals feel an obligation to minimize parental stress and preserve family well-being. Such well-intentioned practice patterns must be based on accurate identification of parental needs.25 We have summarized 6 studies that identified the needs of families of critically ill children (Table 2).


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  		TABLE 2 Systematic Literature Review: Needs of Families of Children in PICUs

 
When uncertainty about the child’s prognosis persists, parental stress from fatigue, poor nutrition, and anxiety can escalate to crisis levels.27,53 Fundamental physiologic needs are often overlooked; in addition, parents themselves may be unlikely to ask for fresh water, food, and sleeping facilities.27 Needs commonly identified by parents include seeing the child frequently, feeling that there is hope, knowing that the PICU personnel care about the child, having a waiting area near the unit, and feeling that questions are answered honestly.27,53–55 Mi-Kuen and Kai-kwong56 categorized these needs into 4 categories: proximity, information, support/encouragement, and comfort. Other studies have identified parental needs that fit readily into these categories.29,53,54,57

Kasper and Nyamathi29 found that the majority of parent-identified needs were psychological (58%), and other studies confirm this.53,55 One study reported that parents (mostly mothers) identified the need to be prepared for the ICU.58 Commonly, PICU admission, critical illness, acute deterioration, and critical trauma are not anticipated, and advance preparation is not an option.

Impact on Families of Critically Ill Children
Studies of the specific impacts on families were evaluated by methodology, time/follow-up axis, and principal findings. These 27 studies are summarized in Tables 3, 4, and 5. Many of these reports10,48,59–70 specified impacts on families of children during critical illness and after discharge and used similar outcome measures. These impacts were identified by using the PSS:PICU31,69–72 and Family Adaptability and Cohesion Evaluation Scale III.61,64,68,72


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  		TABLE 3 Systematic Literature Review: Psychological Impact on Families of Children With Critical Illness

 

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  		TABLE 4 Systematic Literature Review: Physical Health Impact on Family Members of Children With Critical Illness

 

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  		TABLE 5 Systematic Literature Review: Social Impact of Family Members of Children With Critical Illness

 
Nine articles examined family impact postdischarge.* The authors of several cohort-comparison studies attempted to elucidate the difference between family impact in life-threatening and non–life-threatening disease states.31,41,71,73,74 Sample sizes varied markedly (range: 7–189 families), and many were anecdotal. Most studies described findings in cohorts that were largely white and excluded non–English-speaking families. This limitation is a crucial deficit and vital to note when planning future research. In addition, most family-impact data have been obtained from mothers,12,63,67,69,71,74,75 although one study was conducted solely with fathers.31 A substantial number of studies have focused on children who were in the PICU for the first time.58,60,67,69–71,74,76,77 Eight studies compared families of children who were admitted emergently to the PICU to those admitted who were admitted nonurgently.31,50,60,61,69,70,76,77

We reviewed 18 articles that described the psychological impact on families of children with critical illness and injury (Table 3). Six articles focused exclusively on the effects on mothers.31,50,60,66,67,73 Shears et al63 reported that a higher percentage of mothers than fathers had symptoms of psychiatric disorder and/or posttraumatic stress disorder (PTSD) at admission and after discharge of the child from the PICU. Tomlinson et al67 noted increased psychological distress and decreased well-being in mothers when critically ill children were diagnosed with an illness/injury that would have a chronic component, as compared with mothers of those children with time-limited illness/injury. Additional research is needed to quantify the increasing amount of familial psychological stress generated by the drastic decrease in PICU mortality rates and increasing survival rates of children with disabilities.

Parents of children with life-threatening illnesses received support more often from health care personnel than did parents of children with chronic illnesses according to one report.73 Thus, acuity of the disease and its stage in evolution toward chronicity may influence the amount and types of support resources available to parents. This finding is important, because other data (see description of stressors above) imply that maternal stress levels increase when incomplete recovery or chronic diseases are likely outcomes.3

We reviewed 7 studies that reported physical health impact on families (Table 4). Findings included deteriorating physical health in parents and caregivers compared with adult peers.50,75,78,79 Mothers and fathers both were reported to have similar physical reactions to critical illness or injury in their children: numbness, malaise (as in impending illness), fatigue, headaches, and irritability.31,60 Deleterious impacts on family health behaviors such as sleep and meal patterns were reported along with infections and stress-related symptoms such as headache, low energy, and anxiety.{dagger}

Eighteen studies that described social impact on families of critically ill children are reviewed in Table 5. Categories of social effects were in several areas: economics, family roles, function, cohesion, and interpersonal relationships. Carnevale50 found that attachment strength increased shortly after the PICU admission while, at the same time, relationship changes were more profound as illness severity increased. Several others reported this direct relationship between severity of illness and negative family social impact.12,42,68,80 A crucial area of study is marital conflict and divorce.10,12 Negative impact on marital and domestic-partner relationships has been described elsewhere.11 In contrast, Philichi61 found no difference in family cohesion, and this finding was confirmed by another study.67 The commonly expected financial stress, employment loss, and overall negative socioeconomic impact on families with a critically ill child were documented by only one study in our review.68

Of course, family functioning, adaptability, and resilience are affected by many factors including baseline function before critical illness/injury.51,70 Two studies reported no significant change in social function in families of children with critical illnesses.61,67 Mothers tended to see the family as dysfunctional, with decreased cohesion postdischarge,70,71 but were content with overall family function. Maternal stress was reported as directly related to illness severity, duration of PICU stay, distance of the unit from family home, and length of mechanical ventilation.42,70 It seems likely that maternal stress levels are indicators of overall family social impact, but this remains to be clearly demonstrated.67

Family Coping in Pediatric Critical Illness
"Coping" can be defined as the behavioral and cognitive efforts used to manage internal and/or external stressful demands that outweigh an individual’s immediately available resources.81 Thirteen studies have evaluated family coping behaviors in the context of critical childhood illness/injury (Table 6). Melnyk82 described 2 primary types of coping strategies: emotion-focused coping, characterized by positive reappraisal, self-control, and distancing, and problem-focused coping, including social support and confrontative expression. Individual coping strategies are a unique composite influenced by age, gender, ethnicity, socioeconomic status, past crisis experience, environment, and accessible support.82–84 Common behaviors identified under these circumstances include escape/avoidance, spiritual/religious guidance, and several others.83


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  		TABLE 6 Systematic Literature Review: Family Coping in Pediatric Critical Illness

 
Philichi61 modeled family coping dynamics at 2 levels: internally (the way a family deals with difficulties between its members) and externally (the way a family deals with problems in the environment). Ideally, families cope at both levels. Five studies found that coping, particularly problem-focused coping,58 is enhanced when parents are active participants in the care of the child.58,82,85–87 These and other authors reported a significant correlation between adequate parental coping and clear communication between clinical staff and parents. Minimizing the discrepancy between expectations and reality was found to be a central element.11,87–90

Interventions for Families of Children With Critical Illness
We reviewed 14 studies that evaluated interventions, defined as modification or addition of care intended to ameliorate family impact (Table 7). Many studies reported interventions that were efficacious in stress reduction among critically ill children and their families.58,82,86,87,89,91–107 Almost all of the interventions involved clear communication as a prominent feature. Enabling parental caretaking for children with critical illness/injury is preeminent in all successful interventions that have been described.57 Intervention strategies specifically tested, such as the Nursing Mutual Participation Model of Care and the Creating Opportunities for Parent Empowerment intervention, have increased parental participation at their core.87,96,97,101 In addition, provision of hospitality interventions such as meal vouchers, sleeping accommodations, transportation and parking, laundry facilities, and telephones81 are significant for families who are struggling with conflicting emotions and responsibilities.57


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  		TABLE 7 Systematic Literature Review: Interventions for Families of Children With Critical Illness

 
Woodsfield57 relates that the PICU nurse’s role of careful observation and recording enables recognition of coping strategies, assessment of their effectiveness, and unmet parental needs. It is interesting to note that PICU nurses were the predominant investigators in interventions to mitigate family impact.{ddagger} In addition, a report from St Jude Children’s Research Hospital109 indicates that awareness of staff member vulnerabilities, peer support among staff for each other, and intellectualization were enhanced when transdisciplinary staff communication was open. This study indicated the possibility of substantial, easily implemented change.

Successful interventions do not always depend on human-to-human interaction.87,95,99,101,104,105 Use of electronic and Internet-based technologies may enhance communication between the professional team and family members and can deliver, modify, and monitor therapy.87,105 In a small study of 6 families of children with traumatic brain injury, Wade et al105 reported that all 5 siblings demonstrated evidence of improved relationships with parents after a Web-based intervention. Authors of 3 studies varied timing and type of such interventions and found that a combination of preadmission and ongoing information seemed to be especially effective.58,98,103 Although this "scheduled" approach to minimizing family stress may be uniformly applicable to only a small number of PICU families, it merits additional study. We did not find comparative studies of relative efficacy among technologies in sibling intervention programs.


   DISCUSSION, LIMITATIONS, AND CONCLUSIONS
TOP
 ABSTRACT
 BACKGROUND
 SIGNIFICANCE
 METHODS
 RESULTS: SYSTEMATIC LITERATURE...
 DISCUSSION, LIMITATIONS, AND...
REFERENCES
 
Many studies excluded patients with a history of chronic illness, previous hospitalization, or child abuse, thus limiting the applicability of their findings. Most samples were limited to English-speaking families and white, married mothers. This is a significant limitation of existing science that might inform effective change for families with critically ill children. Although we acknowledge the need for additional descriptive studies about families facing the uncertainty of chronic illness and disability in their children, we caution that such studies must be inclusive of the demographic realities of childhood critical illness and injury. Although we believe that our search was comprehensive, thorough, and productive, we may have overlooked significant contributions to understanding family impact in critical illness and injury. For example, we were unable to interface extensively with the economic, anthropologic, sociologic, and demographic literature that might inform or add contextual meaning to the work reported here. The majority of literature reviewed involved the PICU as a common denominator. Presentation of pediatric critical illness/injury in other settings was not heavily included because of the paucity of related articles.

There is a broad spectrum of variability in the responses of parents and siblings to the PICU environment, but certain generalizations seem justified. The admission of a child to the PICU, emergently or postoperatively, imposes severe and often overlooked stressors on the entire family. Several needs of parents and other family members seem readily apparent. Professional practice at every level and discipline should encompass care for these family needs: rest, nutrition, hydration, communication, and a sense of partnership with the staff. On the basis of our review, we conclude that such resources are readily available and would hope that practitioners of pediatric critical care medicine, nursing, and surgery will incorporate heightened awareness of family stressors and needs into their practice.

Specific stress symptoms of family members (parents and siblings) as they vary with less traditional family structures remain understudied. There is urgent need for study of stress patterns in our heterogeneous PICU families. These heterogeneous families are blended, extended, multigenerational, and headed by gay/lesbian, single, and nontraditional parents. They represent both affluence and poverty, but the incidence of traumatic injury, perinatal residual morbidity, and limited access to resources that might mollify childhood injury/illness are far more prevalent in disadvantaged cultural and ethnic groups. This broadening of the research basis of pediatric critical care practice should be transdisciplinary and, ideally, led by health care professionals with doctoral preparation in ethnography, anthropology, sociology, and psychology.

Many studies duplicated one another in finding similar impact patterns of stress: anxiety, social disruption, physical malaise, weakness, and sickness. Data about marital/relationship dissolution, family disruption, long-term functional, and economic effects, particularly in the setting of a family attempting reintegration of a chronically ill and/or disabled child, are remarkably few. Employment loss in parents and caregivers with subsequent decrement in family economics and sibling opportunities might be expected. Marital dissolution and family break-up after certain events that bring families to the PICU (eg, traumatic injury and near-drowning) are said to be common, but we did not find large studies definitively supporting or refuting these beliefs. Few studies clearly described father and sibling stressors and responses. Existing studies varied substantially in structure and scope, and observational cohorts were too small to yield generalized findings.

Our review certainly demonstrates the need for refinement of research methodology. As larger cohorts are available for collaborative study, particularly in the new NIH/National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network, it is imperative that multidisciplinary research into the family impacts of childhood critical illness and injury be conducted. More studies discerning interaction among risk factors and how they affect families are needed to minimize subsequent disability and dysfunction.

Uniformly, we found that existing studies suggest that coping behavior is enhanced when family members are actively involved in the child’s care and receive straightforward information. Ensuring that all medical and surgical personnel at every level receive training in family counseling and interaction under crisis circumstances is a responsibility that could be assumed by faculty. There is wide variation in curricula in pediatric critical care practice disciplines; this is an area for potential transdisciplinary change.

Culturally appropriate care should be the norm in dictating practice in the PICU. We found that existing studies suggest this, but research lacked focus about altered coping strategies and the potential efficacy of various interventions in nonmaternal family members, various ethnic groups, and nonnuclear families. As more children survive critical illness and injury and the population of disabled children increases, more research to enlighten pediatric critical care practice is urgent.


   ACKNOWLEDGMENTS
 
Financial support for this work was provided by the Department of Health and Human Services, NIH, Office of the Director, Office of Rare Diseases, Landon Pediatric Foundation, and Andre Sobel River of Life Foundation.

We gratefully acknowledge the efforts of Francoise Arnaud, PhD, of the resuscitative medicine division at the Naval Medical Research Center (Silver Spring, MD). The opportunity to see cutting edge critical care research was of major value in our scholarship. We are thankful to Christiane Corriveau, MD, and the entire multidisciplinary professional team at Children’s National Medical Center (Washington, DC). Finally, special acknowledgment and gratitude are due to Donald Mattison, MD, PhD, of the National Institute of Child Health and Human Development, without whose special sharing, guidance, and encouragement this scholarship would not have been possible.


   FOOTNOTES
 
Accepted Aug 29, 2006.

Address correspondence to Marysia Shudy, University of Minnesota Medical School, 1694 14th Ave NW, New Brighton, MN 55112. E-mail: shud0014{at}umn.edu

The authors have indicated they have no financial relationships relevant to this article to disclose.

* Refs 14, 31, 41, 62, 65, 67, 69, 70, and 72. Back

{dagger} Refs 31, 50, 59, 60, 67, 71, 75, 78, and 79. Back

{ddagger} Refs 58, 91, 93, 96, 97, 99, 103, and 106–108. Back


   REFERENCES
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 ABSTRACT
 BACKGROUND
 SIGNIFICANCE
 METHODS
 RESULTS: SYSTEMATIC LITERATURE...
 DISCUSSION, LIMITATIONS, AND...
 REFERENCES
 

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PEDIATRICS (ISSN 1098-4275). ©2006 by the American Academy of Pediatrics

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