Pediatric Annals

Family Functioning Following Pediatric Traumatic Brain Injury

Abstract

Of the more than 100 000 children each year who are hospitalized with traumatic brain injury (TBI), many experience subsequent long-term physical, intellectual and behavioral deficits.1,3 The number of persons actually affected is far greater, however, since the families of many of these injured children also experience profound pain and loss.4,5 Because family support is critical to the injured child's successful rehabilitation and community reentry,6,7 it is essential that the family emerge from the experience with the strength and coping resources necessary to help their child sustain optimal functioning over time. Most, but not all, families appear to succeed in this goal. Some become even stronger in their capacity to respond to life's challenges. Understanding the unique factors that contribute to the differences with which families respond to adversity has been an established topic of research in the area of chronic illness8-10 and only more recently a focus in childhood TBI.4

This article reviews the basic principles of family functioning, summarizes current research in the area of family functioning following childhood TBI, identifies common family responses in the first year following injury, and offers recommendations to pediatricians in their efforts to support families during their child's recovery following TBI.

FAMILY FUNCTIONING AND ADAPTATION

The family is the child's primary social system, providing love, nurturance, and safety. The healthy family's integrity is maintained through bonds of mutual affection and shared goals, while simultaneously providing opportunities for the growth of individual family members. Like other larger systems with which it interrelates, every family (whether functional or dysfunctional) is governed by rules that determine its structure and function and affect family roles and relationships in predictable ways.11-13

Family functioning encompasses a continuum from good to poor, but in all families a state of equilibrium, or "homeostasis," is maintained by the balance of resources that are used to cope with the stress the family experiences. Coping resources can be both tangible (eg, financial, community agency resources) and intangible (eg, self-esteem, family cohesion, and problem-solving skills) and are often acquired over time in response to stress. The family is always changing, and its equilibrium is constantly being challenged by normal developmental circumstances (eg, adolescent rebellion or the birth of a child) or by other outside events (eg, loss of a job or illness).

How the family appraises the stressful events it encounters reflects the culture, values, and previous experience the family has had in confronting crisis and change. This appraisal is extremely important in understanding family adaptation because it contributes either to overall family stress or coping resources. When families view their situation as hopeless or beyond control, for example, or when there is a sense of guilt for causing a painful event, overall stress may increase. Conversely, functional coping may be enhanced when the family has confidence in its capabilities and sustains a realistic appraisal of what is within its power to influence and what must be entrusted to others (eg, physicians, social services, or God).

When family stress exceeds existing coping resources, families experience disequilibrium and crisis, resulting in a state of helplessness and disorganization. Equilibrium is restored only when new coping resources are acquired, stressors are reduced, or family members change their perception of events affecting them. Poorly functioning families or families with few resources may be more vulnerable to recurrent crises than those that show more signs of health. For the healthy and resilient family, crisis also can provide an opportunity for growth, the development of new coping skills, and an increased sense of competence and family cohesion.

Characteristics of Healthy and Resilient Families

The answer as to why certain families…

Of the more than 100 000 children each year who are hospitalized with traumatic brain injury (TBI), many experience subsequent long-term physical, intellectual and behavioral deficits.1,3 The number of persons actually affected is far greater, however, since the families of many of these injured children also experience profound pain and loss.4,5 Because family support is critical to the injured child's successful rehabilitation and community reentry,6,7 it is essential that the family emerge from the experience with the strength and coping resources necessary to help their child sustain optimal functioning over time. Most, but not all, families appear to succeed in this goal. Some become even stronger in their capacity to respond to life's challenges. Understanding the unique factors that contribute to the differences with which families respond to adversity has been an established topic of research in the area of chronic illness8-10 and only more recently a focus in childhood TBI.4

This article reviews the basic principles of family functioning, summarizes current research in the area of family functioning following childhood TBI, identifies common family responses in the first year following injury, and offers recommendations to pediatricians in their efforts to support families during their child's recovery following TBI.

FAMILY FUNCTIONING AND ADAPTATION

The family is the child's primary social system, providing love, nurturance, and safety. The healthy family's integrity is maintained through bonds of mutual affection and shared goals, while simultaneously providing opportunities for the growth of individual family members. Like other larger systems with which it interrelates, every family (whether functional or dysfunctional) is governed by rules that determine its structure and function and affect family roles and relationships in predictable ways.11-13

Family functioning encompasses a continuum from good to poor, but in all families a state of equilibrium, or "homeostasis," is maintained by the balance of resources that are used to cope with the stress the family experiences. Coping resources can be both tangible (eg, financial, community agency resources) and intangible (eg, self-esteem, family cohesion, and problem-solving skills) and are often acquired over time in response to stress. The family is always changing, and its equilibrium is constantly being challenged by normal developmental circumstances (eg, adolescent rebellion or the birth of a child) or by other outside events (eg, loss of a job or illness).

How the family appraises the stressful events it encounters reflects the culture, values, and previous experience the family has had in confronting crisis and change. This appraisal is extremely important in understanding family adaptation because it contributes either to overall family stress or coping resources. When families view their situation as hopeless or beyond control, for example, or when there is a sense of guilt for causing a painful event, overall stress may increase. Conversely, functional coping may be enhanced when the family has confidence in its capabilities and sustains a realistic appraisal of what is within its power to influence and what must be entrusted to others (eg, physicians, social services, or God).

When family stress exceeds existing coping resources, families experience disequilibrium and crisis, resulting in a state of helplessness and disorganization. Equilibrium is restored only when new coping resources are acquired, stressors are reduced, or family members change their perception of events affecting them. Poorly functioning families or families with few resources may be more vulnerable to recurrent crises than those that show more signs of health. For the healthy and resilient family, crisis also can provide an opportunity for growth, the development of new coping skills, and an increased sense of competence and family cohesion.

Characteristics of Healthy and Resilient Families

The answer as to why certain families appear to reorganize or become stronger following a crisis, while others show symptoms of deterioration, appears to be related to the concept of resilience. Over the past 20 years, researchers and clinicians in the field of family systems theory have identified traits common to healthy and resilient families, defined as those most likely to recover from adversity and adapt to change.11,14 These traits can be seen in Table 1 . Just as families must balance life stresses with coping resources, their closeness and togetherness, conformity, and individuality also must be balanced.

Most families immediately show resilience at times of adversity, and clinicians need to be mindful not to unwittingly undermine their natural abilities. Maintaining a collaborative relationship that supports strengths and encourages family competency should be the goal. Some families have the potential to be resilient with low-key interventions. Other families, however, may be so dysfunctional that routine services are inadequate, and referral to service agencies for support and counseling is required.

RESEARCH ON FAMILY FUNCTIONING AND CHILDHOOD TBI

Regardless of the injury severity, most families of children with TBI experience stress immediately following the injury.4,15 Levels of family stress dissipate in the families of mildly and moderately injured children over the first few months. These families report few changes in most family relationships and coping resources during the year following injury. In contrast, families of children with severe injuries report increasing stress and deterioration in family relationships and coping resources.

Preinjury family functioning is a far better predictor of 1-year family functioning following childhood TBI than injury severity, however.4 As is true also in families of children with chronic illness,8-10 families of children with TBI that are more cohesive, expressive, and have better family relationships, and those with lower levels of preinjury stress and control (rigidity) are more likely to have positive adaptation following injury. Conversely, poorly functioning families that are controlling (rigid), under more stress, and have fewer coping resources experience the most difficulty in adjusting to the added strain of TBI.4

Family factors, in combination with injury severity, also play an important role in predicting overall levels of child competence, adaptive functioning, and behavior problems following TBI.6,7 Preinjury family functioning is a better overall predictor of child behavior problems than of academic outcomes, however.7 Not surprisingly, academic outcome is influenced more by injury severity than by family factors. Nevertheless, children who live in families with better preinjury global functioning, stronger family relationships, and lower levels of stress and control have both fewer behavior problems and better academic outcomes at 1 year.16

FAMILY ADAPTATION FOLLOWING TBI

Research and clinical data strongly suggest that family adaptation following severe TBI is not a static event but fluctuates over time.4,16-18 Resolution of grief often takes a meandering course. Although each family is unique in its response to TBI, it is important for pediatricians to recognize common family reactions through the first year after injury and approaches that can be used in helping families during recovery (Tables 2 and 3).

The Injury Event and Critical Care Periods

The experience of waiting for a child in a busy hospital emergency department is extremely confusing and frightening for most families. With their child's life in question, parents may exhibit a state of high anxiety, panic, and denial. As teams of total strangers assume control, parents sit back helplessly while an often bewildering array of events unfold.

Table

TABLE 1Characteristics Pf Healthy and Resilient Families

TABLE 1

Characteristics Pf Healthy and Resilient Families

Transfer to the intensive care unit sustains the feelings of fear, helplessness, and uncertainty. With lights, monitors, specialized equipment, and often a full view of other critically ill patients, the intensive care unit can be quite overwhelming to parents. Although the initial feelings of shock and denial may have worn off, there may be a transient return of these states. Parents may begin expressing guilt about the injury event, and how they might have prevented it. It is not uncommon for parents to incorrectly interpret their child's body or eye movements as signs of improvement. Conversely, families also may be the first to see legitimate improvement and change as well.

Stabilization and the Acute Care Period

When a child regains consciousness, parents experience a flood of relief that unfortunately can be short-lived. When children recover rapidly, families generally adjust quickly, are usually optimistic and cooperative with staff; and sometimes emerge from the experience with increased strength and resilience. If recovery is slow, feelings of loss and sorrow can return. While much of this sadness comes from witnessing the child's acute stress, parents may have the unexpressed fear that their child is forever changed. As a result, parents may begin to set arbitrary time lines for "recovery." Subsequently, the inability of the parent to speed improvement and the limited options for parent participation in treatment may continue to foster feelings of ineffectiveness and loss of control even for the most resilient of parents. Sometimes, parents deny the harsh reality of evident cognitive limitations or dismiss altered behavior or personality as a reaction to the unfamiliar hospital environment.

The Inpatient Rehabilitation Period

Families usually experience renewed optimism at the prospects of rehabilitation. They maintain this attitude through the first several weeks only to become, once again, discouraged and confused if improvement does not proceed as hoped. Setbacks are common, and parents may vent their frustration and anger on staff, openly disputing decisions or demanding treatment that exceeds the child's level of physical or cognitive functioning.

Table

TABLE 2Family Management in the Critical and Acute Care Periods Following Childhood Traumatic Brain Injury

TABLE 2

Family Management in the Critical and Acute Care Periods Following Childhood Traumatic Brain Injury

Parents and siblings whose lives have been disrupted during the critical and acute care periods long to return to some normalcy at home. In rigid households, where roles and responsibilities cannot flexibly be interchanged, family members experience heightened tension. Single parents are also at a serious disadvantage, especially when other dependent children are at home. Siblings commonly feel neglected, overshadowed by the real and perceived demands of the situation. They may feel angry and resentful at parents who seem to have little time for them or of increased household responsibilities. They may experience guilt for feeling resentful, for being the one to "escape" injury, or for the embarrassment they feel over the new and strange behavior and cognitive deficits of their injured sibling. Moreover, they are less likely than adults to be able to express these confusing feelings directly and consequently are isolated.

Rehabilitation is a time when families are able to participate in a plan of action focused on maximizing the child's recovery. Family assessment should have identified at-risk families with limited coping resources and a history of poor functioning. These families must be provided with increased support during the most difficult transitions ahead (eg, physical setbacks, first weekend home, and discharge from rehabilitation).

Table

TABLE 3Family Management During Rehabilitation and in the First Year of Community Reentry Following Childhood Traumatic Brain Injury

TABLE 3

Family Management During Rehabilitation and in the First Year of Community Reentry Following Childhood Traumatic Brain Injury

Community and School Reentry in the Year Following Discharge

Leaving the supportive setting of a rehabilitation program can be traumatic even for the best functioning of families. Ideally, comprehensive outpatient services that include regular clinic visits, physical, occupational and speech therapy, and an educational plan will have been developed by the hospital team in collaboration with local school personnel. Even when an appropriate educational plan is proposed, however, it can fail because few educators are trained to work with the more subtle cognitive and behavioral deficits associated with TBI. Not realizing that apathy and lack of initiation may be a part of the injury, the child also may be blamed by both teachers and parents for not trying hard enough.

When outpatient rehabilitation services are not available, parents who managed to cope adequately with their child's deficits while in a hospital or rehabilitation program fece the harsh reality of advocating for their child without guidance. Many parents feel confused and frustrated with the time-consuming and complicated tasks they face. Dysfunctional families with limited coping resources find this challenge all but impossible.

At home, parents may become distraught and overwhelmed by the recognition of more subtle cognitive difficulties (eg, poor judgment, inability to make decisions, and illogical thoughts) and any increasingly apparent behavioral problems (eg, impulsiveness, aggressiveness, and immaturity). Siblings are often more openly resentful and rebellious than they were earlier. Parents watch helplessly as their injured child's friends drift away and their child fails to develop new friendships. Separating the complex developmental changes the child is undergoing from the effects of the injury is difficult, however. In some instances, the physically "invisible" nature of TBI, the ambiguity of the prognosis, and the parents' normal expectation of developmental problems cause them to deny the presence of significant deficits and hold out for "complete recovery."

The following case illustrates how a healthy family's resilience allowed them to successfully cope with the stressful events and emotional trauma of severe childhood TBI in the year following injury.

CASE STUDY

John, age 9, sustained a severe TBI in an automobile crash while traveling cross country with his family (father, mother, twin brother, and preschool sister). John and his mother, who also suffered a moderate TBI, were admitted to the nearest hospital. Following stabilization, they were transferred to hospitals in their home community where John remained unconscious for another month. John's mother was discharged, but continued to experience headaches, depression, short-term memory loss, and disorganization, making it difficult for her to carry out routine household chores. John's father, an engineer, was initially overwhelmed by his many increased responsibilities. Without help from the extended family, who lived far away, he had little time to rest. Fortunately, John gradually regained consciousness and was able to enter a rehabilitation program where he spent the next 3 months. Although there were a few medical setbacks, he mostly made steady progress. He returned home with residual motor, intellectual, cognitive, and behavioral impairments that required a special education program in his school and great understanding at home.

John's mother continued to be emotionally labile. She and her husband received counseling and other services from a community psychologist and, by 1 year, her abilities to manage household and child care tasks had increased. John's father continued to return from work to deal with unfinished household and childcare duties, provide emotional support, and help John with his needs. John's twin brother had become increasingly impatient and embarrassed by John's intellectual deficits and social immaturity. The inappropriate behavior John displayed resulted in his exclusion from play with former friends. Despite these struggles, at 1 year postinjury, John's family was assessed as being well-functioning, demonstrating cohesiveness, mutual support, and a caring relationship. Each family member was encouraged to express thoughts clearly and directly. Johns father was able to be flexible, modifying his responsibilities gradually as his wife recuperated. The family's needs were supported by an understanding work supervisor, the expertise of professionals, and a "church family" network. Both parents believed that the experience of the injury had increased their family's ability to cope. They took "one day at a time" and "more fully appreciated one another, God, and life in general."

THE PEDIATRICIAN'S ROLE

Pediatricians are in a unique position to provide support to parents and children following TBI. General intervention goals should be to help ease parent and sibling guilt and anxiety, support family strengths, and encourage the building of additional coping resources. Families need assistance in facing the challenge of normalizing relations with one another and with the injured child, and in maintaining a caring home environment where individual and family needs are recognized and addressed.

Parents do not expect pediatricians to provide solutions to all their problems. They feel reassured, however, when their pediatrician listens and attempts to understand their unique family struggles. Mostly, they need support in fulfilling their primary parental responsibility to help their injured child negotiate the developmental tasks ahead and to achieve maximal independence and fulfillment.

REFERENCES

1. Jaffe KM, Fay CC, Polissar NL, et al. Severity of pediatric traumatic brain injury and neurobehavioral recovery at 1 year - a cohort study. Arch Pirns Med Rehabtl. 1993:74:587-595.

2. Ewing-Cobbs L. Fletcher JM, Levin HS. Neurobehavioral sequelae following head injury in children: educational implications. Journal of Head Trauma Rehabilitation. 1986;4:57-65.

3. Filley C, Cranberg LD, Alexander M, Hart E. Neurobehavioral outcome after closed head injury in childhood and adolescence. Ardi Neural. 1987;44:194-198.

4. Rivara JB. Fay GC, Jaffe KM. Polissar NL, Shurtlcff HA, Martin KA. Predictors of family functioning I year following traumatic brain injury in children. Ardi Phys Med Rehabd. 1992;73:899-910.

5. Waaland R Kreutier J. family response to childhood traumatic brain injury. Journal of Head Trauma Rehabilitation. 1988;73:51-63.

6. Rivara JB, Jaffe KM, fay GC et al. Family functioning and injury severity as predictors of child functioning 1 year following traumatic brain injury. Arch Phys Med Rehabd. 1993;74:1047-1055.

7. Rivara JB. Jaffe KM. Polissar NL et al. Family functioning and children's academic performance and behavior problems in the year following traumatic brain injury: Aldi Phys Med Rehabd. In press.

8. Trute B. Child and parent predictors of family adjustment in households containing young developmentally disabled children. Family Relations. 1990:39:292-297.

9. McCubbin M, Huang S. Family strengths in the care ai handicapped children: targets for intervention. Famdy Relations 1989-,38:436-443.

10. Hamlett K. Pelegrini G? Kan K. Childhood chronic illness as a family stressor. ) Pediatr Psychol. 1992;17:33-47.

11. Chhsty-Seeley J. The family system. In: Christy- Seelcy J, ed. VKwfang flKA me Famdy in Primary Care. New York. NY: Praeger Publishers; 1985.

12. Parad H, Parad L Crisis intervention: an introductory overview. In: Parad H, ed. Crisis lrumenoon. Milwaukee, WiK Family Services of America; 1990.

13. Patterson JM. Chronic illness in children and the impact on families- In: Quintan C, Nunnauy E. Cox F. eds. Chronic IBness ana DisaWir». Beverly HdIs, Calif: Sage; 1988.

14. Patterson JM. Family resilience to the challenge of a child's disability: Pedum Ann. 1991;30:491-499.

15. Perron SB, Taylor HG. Montes JL Neuropsychological sequelae, familial stress, and environmental adaptation following pediatric head injury. Developmental Neuropsychology. 1991:7.69-86.

16. Pobnko PR. Bann J. Leger D. Working with the family. In: Ylvisaker M. Head Injury Rehabilitation Children and Adolescents. San Diego. Calif: College-Hill Press Inc; 1985.

17. Manin D. Children arid adolescents with traumatic brain injury: impact on the family. Journal of Learning Disabilities. 1988:21:464-470.

18. Leak MD. Psychological implications of traumatic brain damage for rhe patient's family Rehahhtaoon Psychology. 1986:241-250.

TABLE 1

Characteristics Pf Healthy and Resilient Families

TABLE 2

Family Management in the Critical and Acute Care Periods Following Childhood Traumatic Brain Injury

TABLE 3

Family Management During Rehabilitation and in the First Year of Community Reentry Following Childhood Traumatic Brain Injury

10.3928/0090-4481-19940101-09

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