Textbook of Traumatic Brain Injury - part 8 ppsx

533 30 The Family System Marie M. Cavallo, Ph.D. Thomas Kay, Ph.D. The Family System: Homeostasis and Involvement Because hospitals and rehabilitation programs are under increasing pressure to become more efficient and generate more money at lower rates, and because managed care sets more limits on the nature, length, and coverage of “nonessential” services, non-reimbursed services and programs—such as family education and involvement of families in team meetings—of necessity decline. It can no longer be assumed that families of persons with traumatic brain injury (TBI) will be attended to and given what they need. It is our hope that this chapter will serve as an introduction to service pro- viders across disciplines to sensitize them to the needs of families so that that the role of “family therapy” can be spread out and shared across the rehabilitation team and into the community. The effect of TBI on the family system merits study for five important reasons. 1. TBI inevitably causes profound changes in every family system. 2. These changes dramatically influence the functional recovery of the person with brain injury. 3. The effect of TBI continues over the life cycle of the family, long after the initial adjustment to disability is made. 4. The lives of individual family members may be pro- foundly affected by a brain injury in another family member. 5. Family assessment and intervention are crucial at all stages of rehabilitation and adjustment after TBI, even when a pathological response is not present. TBI is an event that affects and alters an entire family, not only the person with the injury. Families are systems with sets of relationships and roles that develop to maintain an effective balance in the day-to-day world. This homeostasis is broken at the moment one person in the family sustains a brain injury. The struggle of the family to “right itself” and reestablish a new homeostasis after TBI in one member is parallel to the process of rehabilitation and adjustment in the injured person. In the way that recovery is never complete for the individual after brain injury, the family as a unit can never return to its former “self.” Assisting families in the process of reestablishing equilibrium, with new sets of roles, relationships, and goals, is the purpose of family assessment and intervention. Because of the range of physical, cognitive, and behavioral-affective changes that can result from TBI, the injured person is often more dependent on family members and therefore more intertwined in and affected by family dynamics. Consequently, the family’s relative success or failure in establishing a functional equilibrium plays a significant role in determining the relative independence of the person with brain injury, making family interventions critical to the rehabilitation process. Although it is generally agreed among professionals that families should be involved in the rehabilitation process, family involvement is often limited to keeping families informed of treatment plans and periodic appearances at team conferences, where families may be updated on progress and encouraged to participate in carrying out the team’s care plan. This approach both lacks the active in- put of the family in defining the rehabilitation goals and process and fails to appreciate the needs of the recovering family system. Equally unfortunate is the fact that psychiatric intervention is usually the consultation of last resort: when 534 TEXTBOOK OF TRAUMATIC BRAIN INJURY there is a crisis that no one else can manage, when medication is required, or (especially) when someone becomes suicidal. In our opinion, this is a serious underuse of potential psychiatric knowledge and skill in the area of family systems. The model developed in this chapter involves not primarily tertiary psychiatric intervention in the event of crisis, but instead a prospective, preven- tive, primary intervention model that calls for the psy- chodynamic and interpersonal expertise of the psychia- trist to be brought to bear in helping families cope from the moment of injury through long-term adjustment. In fact, this chapter is less concerned with delineating traditional psychiatric manifestations in the family and more concerned with articulating the effect of TBI on families, how they respond, what they need, and what psychiatric interventions are appropriate along the continuum of care. Impact of TBI on the Family The impact of TBI on the family can be conceptualized in three broad phases. In the acute phase, in which the primary issues are survival, medical stabilization, and minimization of permanent damage, the family coa- lesces and orients all of its energy toward the care of the injured person. In the rehabilitation phase, family roles are reorganized, and the goal is the restoration of as much physical and cognitive functioning as possible after brain injury. In the reintegration phase, the individual recovering from the injury attempts to return as much as possible to a level of maximum engagement and productivity in the community, while the family settles into longer-term patterns and equilibrium that allow them to resume their family life cycle with an altered identity. The primary issues the family faces during each of these phases are considered in the section A Model of Assessment and Intervention. In the long run, however, TBI is distinguished from other catastrophic injuries in terms of effect on the family by the following facts: 1) cognitive, emotional, and behavioral sequelae, which alter the personality and ca- pacities of the injured person, are constant (Kay and Lezak 1990); 2) the deficits are permanent, and the family must establish new patterns and goals to incorporate a member with brain damage; and 3) the demographics of TBI (primarily affecting young, adult men) dictate that, unlike strokes or dementing diseases affecting primarily the elderly, TBI affects families who are generally young and in the early stages of their development (Kalsbeek et al. 1980). Research Literature on Families The physical, emotional, psychosocial, and financial costs of TBI for the family of an injured person have been documented in a number of reviews (Bond 1983; Brooks 1991; Florian et al. 1989; Livingston 1990; Perlesz et al. 1999; Romano 1989). An overview of trends since the early 1970s distinguishes an evolution of TBI family research that includes four main phases (Kay and Cavallo 1991). Phase I In phase I, family members were studied as “windows” on the person with the brain injury (e.g., Bond 1976; Hpay 1970; Oddy et al. 1985). These studies were useful in documenting the cognitive, affective, and personality changes after brain injury and the persistence of symptoms over time. Phase II In phase II, studies that primarily documented the effects of brain injury on the patient also incidentally noted the effect of the injury on significant others. For example, Panting and Merry (1972) documented that 61% of wives and mothers required medication to help them cope with relatives with TBI, wives had more difficulty coping than mothers, and more than one-half of all relatives thought support services were inadequate. A series of studies by Oddy et al. (1978b) in London noted that increased dependence on families was associated with greater severity of injury, poorer family relationships at 1 year were associated with personality changes in the person with the brain injury (Oddy and Humphrey 1980), and personality changes were associated with greater family dependence (Weddell et al. 1980). These studies, however, did not have the family as their primary focus. Phase III In phase III, beginning in the late 1970s but peaking in the mid- to late 1980s, families—or at least individual family members—became a primary focus of research. By documenting the severity of injury, presence of a range of neurobehavioral symptoms, and the reactions of family members, these studies began to identify the factors that led to distress and burden on primary caregivers. For example, Oddy et al. (1978a) found that depression in family members correlated not primarily with severity of injury (as measured by coma or posttraumatic amnesia), but with the number and extent of cognitive symptoms, as well as with the failure to return to work and social isolation of the person with the injury. This theme—that the The Family System 535 behavioral manifestations of the injury (both neuropsy- chological and functional), not the neurological severity of the TBI per se, affect family members—is a consistent one in this phase of family research. In the 1980s, Brooks and colleagues in Glasgow published a series of papers articulating the nature and causes of subjective burden of family members after TBI (see Brooks [1991] and Livingston and Brooks [1988] for reviews). A number of themes can be considered established (summarized in Table 30–1). First, in the long run, behavioral, affective, and personality changes are most burden- some to families; physical deficits cause the least burden; and cognitive deficits cause intermediate burden (Brooks and McKinlay 1983; Brooks et al. 1987; McKinlay et al. 1981). Second, in a parallel finding, persons with brain injury and family members agree most when rating the nature and extent of physical problems, agree least about emotional-behavioral problems, and agree moderately on cognitive problems. Family members are most distressed by the changes persons with brain injury are least aware of: the impulsivity, disinhibition, irritability, anger outbursts, insensitivity, and changes in personality. Third, over the course of time, subjective family burden actually increases (Brooks et al. 1987). Subjective family burden becomes more strongly linked to personality changes (Brooks and McKinlay 1983) and less strongly linked to neurological severity (McKinlay et al. 1981). Fourth, there is no one-to-one correspondence between the degree of deficit and the degree of burden; personality char- acteristics of the family member appear to be a factor in how much burden that family member experiences. Al- though all family members experiencing high levels of burden report personality changes in the person with brain injury, it is not conversely true that whenever personality changes occur the result is high burden on the family (Brooks and McKinlay 1983). Similarly, although low levels of burden are associated with low levels of deficit, high levels of burden may be associated with either low or high levels of deficit (Brooks et al. 1987). However, relatives who rated the patient’s emotional-behavioral problems as high also tended to have high neuroticism scores on the Eysenck Personality Questionnaire (Eysenck and Eysenck 1975). Because the Eysenck score represents a presumably durable personality trait involving maladaptive and anxiety-laden responses in stressful situations, it may be that family members with poorer ego integration experience more affective and behavioral distress from the person with the injury and therefore feel more burden. This suggestion was reinforced by Living- ston (1987) who found that the preinjury psychiatric and health history of the relative accounted for 30% of the variance in the relative’s rating of subjective burden. Although the bulk of work on caregiver burden took place in the mid- to late 1980s by Brooks and colleagues, other researchers continue to explore this area (e.g., Cav- allo 1997; Cavallo et al. 1992; Groom et al. 1998; Koski- nen 1998; Marsh et al. 1998). In summary, subjective burden of family members tends to increase, not decrease, over time; it is most related to changes in personality, emotions, and behavior, of which the person with brain injury is least aware; it is the neurobehavioral manifestations of TBI and not the neurological severity per se that affect family members; and the adjustment of family members plays a large role in determining the subjective burden they experience. For overviews of burden issues, see Chwalisz (1992) and Cav- allo (1997). Phase IV In phase IV of the research literature, predominantly from the late 1980s, the focus shifted from individual family members to families as systems and the effect of TBI on roles, relationships, and the family’s status in society. For example, Kozloff (1987) used network analysis to docu- ment that the size of the social network of the person with the brain injury decreases, multiplex relationships increase (i.e., family members serve more and more functions as nonrelatives drop out), and families with higher socioeconomic status are more able to maintain existing relationships. Maitz (1989) compared families with a member with TBI to a group of families who did not have a person with TBI living with them but in which one of the members either had a sibling with TBI or a sibling married to a person with TBI. He found, using formal measures of family functioning, that families with a member with TBI had less (and more variable) cohesiveness and more variability in TABLE 30–1. Glasgow research on subjective burden after traumatic brain injury Behavioral, affective, and personality changes cause the most burden; cognitive changes cause intermediate burden; and physical changes cause the least burden. Patients and family members agree most when rating physical problems, agree in an intermediate way about cognitive problems, and agree least about emotional-behavioral problems. Over time, family burden increases, becoming more linked to personality changes and less to neurological severity. No one-to-one correspondence between degree of deficits and degree of burden. Note. For more information on subjective burden, see Brooks and Mc- Kinlay 1983; Brooks et al. 1987; Livingston 1987; McKinlay et al. 1981. 536 TEXTBOOK OF TRAUMATIC BRAIN INJURY conflict resolution than those families who did not have a person with TBI living with them and showed a correlation between marital conflict and decreased cohesiveness. Peters et al. (1990) found that good dyadic adjustment (between person with TBI and spouse) was associated with less financial strain, low spousal ratings of patient psycho- pathology, and less severe injuries. Lifestyle changes in families with TBI were documented by Jacobs (1988), who found that families tend to be primarily responsible for providing support, socialization, and assistance to persons with brain injury, with two-thirds of such families experiencing financial adversity. Moore et al. (1993) approached long-term outcome after TBI from a family life cycle model. They looked at a variety of family stressors in relation to distress in families. Perceived financial strain and age of the oldest child were found to be the factors most significantly related to an increase in distress in families. In an investiga- tion of family response to injury in the acute stage of recovery, Curtiss et al. (2000) used Olson’s Circumplex Model (Olson 1993; Olson et al. 1982) to examine changes in family response structure and coping responses pre- and post-TBI. Curtiss et al.’s results were consistent with Olson’s Circumplex Model: significant changes in family structure and coping styles post-TBI were found, with differential changes on the basis of preinjury family structure. Koscuilek and his colleagues (1994, 1996, 1997a, 1997b, 1998) found positive appraisal and family tension management ability to be predictive of successful family functioning and identified factors that enabled families to successfully adapt, such as support from friends. Minnes et al. (2000) found that “reframing” and “seeking spiritual support” as coping mechanisms after TBI were significantly related to more positive outcomes in family members. Douglas and Spellacy (1996) also found that the ad- equacy of social support for caregivers as well as length of PTA and current neurobehavioral functioning were predictive of long-term family functioning after TBI. How- ever, Leach et al. (1994) found that perceived social support was not predictive of depression in individuals with TBI, though effective use of problem-solving and behavioral coping strategies by families was related to lower levels of depression for individuals with TBI. Junque et al. (1997) concluded that residual affective- behavioral problems had the greatest effect on family functioning and that the presence of these symptoms was closely related to a need expressed by families for information concerning TBI. In fact, in a 1997 study assessing knowledge about TBI, Springer et al. found that, whereas families of individuals with TBI had a better understand- ing of the immediate significance of brain injury and its negative effect on cognition, they had more misconceptions about potential long-term functioning, and they en- dorsed common misconceptions about TBI in the areas of unconsciousness, amnesia, and recovery. There are a number of studies that focus on differing perceptions within families with a member with TBI on the basis of a variety of factors, including kinship, role, and gender. A group of researchers (Gervasio and Kreutzer 1997; Kreutzer et al. 1994a, 1994b; Serio et al. 1995) examined a variety of these factors potentially related to family functioning after TBI. Major findings included that outcome predictors, and perceived unmet needs of family members, differed for spouses and parents of individuals with TBI. Cavallo (1997), in comparing wives and mothers of individuals with TBI, found that although mothers were caring for more severely injured individuals with TBI, wives were reporting significantly more subjective burden related specifically to affective- behavioral and cognitive functioning of the individual with TBI. No differences were found between the two groups related to residual physical problems. However, Allen et al. (1994) suggest that there is little difference between parents and spouses in reported stress. In a small number of studies (Cavallo 1997; Perlesz et al. 2000), it has been noted that men rarely identify as primary caregivers in families after a TBI. Perlesz et al. (2000) describe men as secondary or tertiary caregivers and further report that male caregivers may report their distress differently from female caregivers, perhaps as anger and fatigue, rather than depression and anxiety. In studies of differing perceptions of residual problems and family functioning when comparing individuals with TBI to family members and/or professional staff working with them (Cavallo et al. 1992; Fordyce and Roueche 1986; Lanham et al. 2000; Malec et al. 1997; McKinlay and Brooks 1984), some basic concurrence of findings emerge. First, there tend to be differing amounts of agreement between individuals with TBI and their families or staff, or both, on the basis of the types of problems they are being asked to endorse. Second, there are differing amounts of agreement between individuals with TBI and their families or staff, or both, overall. Some have high agreement; some have low agreement, with families or staff, or both, endorsing more problem areas; and some have low agreement, with the individuals with TBI endorsing more problem areas. Third, in general, when family members are endorsing more problems than the individual with TBI, they tend to be in the affective-behavioral realm. Most significantly for this review, however, these studies generally represent a shift from generalizing about how all families respond to investigating differential responses within and among families. The Family System 537 In a study focusing on children with TBI and their families, Barry and Clark (1992) found that, regardless of severity of injury, children with TBI from nonintact families remained as inpatients in rehabilitation significantly longer than children from intact families. In a study of children of brain-injured parents, Pessar et al. (1993) found that, subsequent to the parent’s brain injury, most of the children displayed increased negative behaviors, and correlates of poor outcome for these children included the injured parent’s gender and level of depression. In an interesting study of children with TBI, Yeates et al. (1997) investigated the preinjury family environment as a predictor of outcome in children with TBI. They found that preinjury family functioning had a significant effect on 1-year outcome, even after accounting for injury-related variables. In 1998, another study of children with TBI by Max et al. confirmed this finding. They looked at preinjury psychosocial factors, injury factors, and postinjury factors (such as coping of family members and the development of psychiatric disorders in the child with TBI) as they related to family functioning in the first 2 years after TBI in children. The major findings were that the best predictor of family functioning after an injury was the preinjury family functioning as well as whether the child developed a psychiatric disorder. These findings of the effect of preinjury family functioning and chronic life stressors are consistent with earlier work with children by the Taylor group (Barry et al. 1996; Taylor et al. 1995; Wade et al. 1995, 1996) and the Rivara group (Rivara et al. 1992, 1993, 1994). A more recent study from the Taylor group (Wade et al. 2002) found that, although overall family stress and caregiver burden declined over time after both pediatric brain injuries and orthopedic injuries, families of children with severe brain injuries continued to experience high levels of stress and burden years after injury, especially when compared with families of individuals with orthopedic injuries. It may be that elements in family situations that are beyond the influence of professionals (e.g., financial means and a network of family support) are the potent factors in family adaptation after TBI. Credence is lent to this hypothesis by the results of a recent study by Ergh et al. (2002). The authors found social support to be a significant factor moderating family functioning and caregiver burden after TBI. The more social support a family reported, the more functional the family was. Social support also moderated caregiver distress: in the absence of social support, caretakers were more vulnerable to the effects of time since injury, level of impairment, and lack of awareness on the part of the injured person. One study that demonstrates the potential value of professionally based support is that of Albert et al. (2002). They studied the effects of offering an experimental social work liaison program for families of discharged rehabilitation inpatients with brain injuries of mixed types. In ad- dition to offering education and emotional support, social workers offered practical advice about services and financial matters, and families were free to call at any time. Six months after patient discharge, caretakers who partici- pated in the program showed decreased burden on six of nine scales when compared with caregivers who were tracked and interviewed but did not have access to the liaison program. From a different perspective, Uysal et al. (1998) investigated the parenting skills of individuals with TBI and their spouses as well as the effects on children, specifically related to depression. They found that parents with TBI and their children experienced more symptoms of depression than their comparison groups, although the children did not have any greater frequency of behavior problems. They also found that there were specific areas of parenting in which individuals with TBI and their spouses differed from parents in the comparison group. Finally, the diversity of styles of family adaptation has begun to be acknowledged in recent research. Our own work at New York University (NYU) Medical Center em- phasizes the individuality of families and the influences of relationship, ethnicity, and culture and attempts to identify subgroups of family responses to TBI (Cavallo 1997; Cavallo and Saucedo 1995; Cavallo et al. 1992). This recent phase of the research literature, the study of the family unit, depends on increasingly sophisticated and valid instruments and techniques for assessing family system functioning (see Bishop and Miller 1988 for a review of existing approaches). Most family assessment instruments are inadequately sensitive to particular issues specific to TBI. The NYU Head Injury Family Interview is one attempt to systematically survey family members about the effect of TBI on the person with the injury and on the family system (Kay et al. 1988, 1995). The Head Injury Family Interview is a five-part struc- tured interview designed for both research and clinical uses. It includes five sections covering premorbid, accident, rehabilitation, and community resource utilization (Table 30–2). It gathers information from both the person with the brain injury and significant others and provides a method for documenting the effect of the brain injury not only on the injured person, but on other family members as well. Most questions are hierarchically organized, beginning with open-ended questions (e.g., “What changes have you noticed since the injury?”), proceeding through struc- tured areas (e.g., “Have you noticed any physical changes?”), and ending with focused questions (e.g., “Do you have problems with balance?”). Many of the main areas 538 TEXTBOOK OF TRAUMATIC BRAIN INJURY of inquiry are asked both of the person with the injury and a significant other. Specific sections are provided for impact on parents, spouses, siblings, and children. The interview was developed over 9 years at the NYU Research and Training Center on Head Trauma and Stroke out of a need for an instrument to gather detailed clinical and codable information specific to issues in TBI. The research literature on the success of family intervention is small and relatively recent. Singer et al. (1994) compared two types of support groups for parents of individuals with TBI. They found that a stress management or coping skills approach was much more effective in reducing symptoms of anxiety and depression in families than an information and sharing approach. Carnevale (1996) outlined an approach called the Natural-Setting Behavior Management Program that trained individuals with TBI and their families to implement home-based behavior management programs. The results of the study support the success of this approach in managing behavioral issues after TBI. However, in a so- bering follow-up article, Carnavale et al. (2002) found that neither education alone nor education combined with the Natural-Setting Behavior Management Program was effective in relieving caregiver burden. There is also a small literature addressing family interventions that is more clinical and nonresearch based. DePompei and Williams (1994) describe a family-centered approach to rehabilitation and provide an excellent discussion of family life-cycle issues and episodic loss. Blosser and DePompei (1995) outline a family mentoring approach that can be used by professionals to help develop coping skills in family members and increase family involvement in planning and treatment. Maitz and Sachs (1995) provide an overview of treating families with TBI from a family systems perspective, specifically as it relates to family therapy and issues of power and authority. Kreutzer et al. (1997) outline case analyses and professionals’ issues that contribute to the ability to successfully work with families after TBI. MacFarlane (1999) reviews the family therapy and rehabilitation literature on TBI treatment issues and discusses grief and loss reactions and stage theories of family adjustment. Finally, four additional articles provide unique per- spectives on family issues. Williams (1993) outlines how to train staff to provide family-centered rehabilitation; Rosen and Reynolds (1994) view services to individuals with TBI and their families from a public policy perspective; Hosack and Rocchio (1995) discuss the influence of managed care on the provision of services to families after TBI; and Cavallo and Saucedo (1995) discuss working with families from a variety of ethnic and cultural back- grounds after TBI. Clinical Observations In her classic article, Lezak (1978) provides observations on what it is like for family members living with the TABLE 30–2. New York University Head Injury Family Interview Demographic and preinjury form Demographic information Accident/medical information Preaccident history Psychiatric history Neurological history Follow-up interview Routine medical care Rehabilitation services Psychotherapy Living arrangements Legal/insurance Community service use Significant other interview Problems and changes Problem checklist Activities of daily living Socialization and home activities Patient competency rating Interview for person with the brain injury Problems and changes Friendship and intimacy Employment status Homemaker status Educational status Problem checklist Patient competency rating Impact on the family General Questions for spouse Questions for parents Questions for adult siblings Questions for younger siblings Questions for adult children Questions for younger children The Family System 539 “characterologically altered” person with brain injury. She describes the personality changes that have primary impact on the family: 1) an impaired capacity for social perceptiveness, 2) stimulus-bound behavior (i.e., a con- creteness, a failure to generalize), 3) impaired capacity for control and self-regulation, 4) emotional alterations (including apathy, irritability, and sexual changes), and 5) an inability to profit from experience (i.e., a tendency to repeat maladaptive patterns and not benefit from correc- tive strategies). As a result, family members may feel trapped, isolated, abandoned by outside relatives, and even abused, which often results in chronic or periodic depression among primary caregivers. Lezak’s emphasis on the effect of characterological changes after brain injury (especially involving frontal systems) anticipated the later research documenting that personality and affective and behavioral changes in individuals with brain injury result in the greatest family burden. Clinical experience bears out the research and de- scriptive literature cited in the preceding sections. Physi- cal problems, although at times quite severe and necessi- tating specific family routines or limitations, are usually dealt with most successfully by the family in the long run, in large part because these problems are predictable, can be planned for, are within the awareness of the person with the brain injury, and are visible to and acknowledged by others. Cognitive problems, such as impaired attention, concentration, and memory, are more troublesome because they are less predictable and can invade all spheres of interaction and because their functional impli- cations often are beyond the anticipation of the person with the brain injury. On the other hand, families often can be extremely creative in providing the external struc- tures to minimize the effect of such deficits on everyday life. Emotional, behavioral, and personality changes, however, such as anger outbursts, self-centeredness, impulsivity, disinhibition, and social insensitivity, are extremely difficult to cope with because they can appear suddenly and unpredictably, have (even if not intended) a direct emotional impact on the recipient, are often embarrassing to others, and are extremely difficult to control. Not only do these characterological problems increase stress in internal family life, they also lead to family isolation as fewer friends visit, social outings decrease, and the immediate family bears increasing responsibility for the social network of the person with brain injury. For example, a young father with brainstem and frontal lobe injuries after a high-speed motor vehicle accident and extended coma will typically have physical, cognitive, and behavioral changes. He may learn to compensate for an ataxic gait by walking slower, using a cane on uneven surfaces, and avoiding activities requiring speed and agil- ity. He may learn to compensate in part for severe memory deficits by keeping a detailed memory book, writing down all telephone messages, keeping lists and checking things off as he does them, and posting visual cues around the house for things he needs to do. Adaptations to these physical and cognitive deficits may enable him to be a semiproductive and reliable helper at home. However, if he is behaviorally disinhibited, his outbursts of rage at his wife and children may make him difficult to be around, and his unpredictable and embarrassing disparagement of guests may make it impossible to have friends over, essen- tially isolating the family and leading to severe emotional and interpersonal problems within it. These generalizations tend to apply to all “families” in which two or more persons are living together. Specific variations occur, however, depending on whether the person with TBI is a parent or a child, and brain injury in the family affects spouses, parents, siblings, and children in different ways. These variable effects on family roles are considered in the following section. Family Structure and Role Changes The impact of TBI on various members of the family system has been documented in the literature; for example, Williams and Kay (1991) included a number of first-person accounts from family members, and Lezak (1978, 1988) provided clinical commentary on various family roles. Impact on Spouses In many ways, the spouse, usually the wife, bears the greatest burden when the partner sustains a brain injury. An equal adult partnership has been broken, and the uninjured spouse is often thrust into the role of caregiver—both for the injured partner and for the family when there are children. The result is often financial burden, loss of support, and isolation. Younger spouses may become more dependent on their families of origin, especially if the injured partner is unable to independently carry out household responsibilities. In-law conflicts may erupt between the parents of the injured person and his or her spouse over care issues. In premarital, committed relationships, boyfriends or girlfriends may be excluded and shut out from contact by protective family members who “circle the wagons” against someone not perceived as being part of the family; this can have poisonous effects for years. In traditional families in which the husband was the “family executive,” the wife may be thrust into managing and decision-making roles for which she is not pre- pared. (Increasingly, it is common for the wife to play this 540 TEXTBOOK OF TRAUMATIC BRAIN INJURY executive role.) Spouses often express the feeling of being “single parents”: “My husband and I used to have two children; now I feel like I have three.” Even in situations in which the injury is less severe and the injured partner is able to return to some type of work, it often is far below preaccident levels, and major lifestyle changes are required of the family. With social sympathy and concern flowing mainly toward the injured partner, the caretaking spouse often feels his or her needs go totally neglected, and this can lead to bitterness, despair, or burnout. When there are children, the spouse may be without an equal parenting partner, and in fact competition may develop between the children and the injured partner for the spouse’s attention. Especially in more severe injuries, spouses may feel married to a different person—one they no longer love or feel attracted to. Spouses face an enormous conflict between commitment and guilt if they consider leaving the relationship. This is particularly the case when the couple is young and have either no or young children. The spouse often realistically faces the choice of “sacrificing” his or her life to the injured partner or leaving the relationship to develop a new family. These are difficult moral and personal choices, and the professional is best advised to help the spouse sort out the options rather than imposing his or her own value system. In less tragic cases, enough of the personality and competence of the injured person remain on which to build a mutually satisfying commitment. The situation in which the uninjured partner is con- sidering divorce poses ethical and treatment dilemmas for the clinician. When the identified patient is clearly the person with TBI, it may be appropriate to find another therapist to help the partner, or the couple, deal with the divorce issues. When the identified “patient” is the family, however, it is appropriate for the clinician to work with the whole system—or the parental subsystem—to help the family face these issues. Unlike many mutually agreed-on divorces, however, divorces after TBI are often more unilaterally sought (by the uninjured partner), and the process of negotiating this transition is a combination of supporting the uninjured spouse (who is often ridden with guilt) and negotiating new support systems for the reluctant, angry, and frightened person with TBI—tasks usually more comfortably handled by two persons. Countertransference issues often arise in working with young families of individuals with severe injuries if the personal value system of the clinician is at odds with the decisions of the uninjured partner, or the therapist’s fantasies of improvement and happiness collide with the realities of the marital relationship. These feelings can arise in either direction: the therapist may unconsciously encourage the partner perceived as “trapped” to find a way out or unconsciously discourage a desperate spouse from “abandoning” the injured partner. Awareness of his or her personal feelings is crucial for the therapist, and transfer of the case is appropriate if the decisions of the uninjured partner make it impossible for the clinician to be fully supportive. Sorting out these countertransference issues, from realistically helping the partner to think through the consequences of his or her choices to know- ing when to turn the case over to a colleague, is a crucial but tricky process, requiring self-searching by the therapist and, often, consultation with a colleague. Even when marriages do survive, sexuality and intimacy are often difficult (see Chapter 25, Sexual Dysfunc- tion). Persons with brain injury may have decreased capacity for intimacy and either heightened or lowered sexual drive and may be impaired in their ability to perform sexu- ally (for physiological or psychological reasons). Wives in particular may be pressed to meet the sexual demands of the injured spouse, with little satisfaction for themselves. It is not uncommon for sexual relationships to stop entirely; when the spouse chooses to stay in the marriage, he or she may seek out (with much guilt and need for support) sexual relationships outside the marriage. Impact on Parents When a child is injured, special burdens and pressures exist for the parents. When a young child living at home is injured, the mother usually takes on the role of primary nurturer and caregiver. This may create tension within the marital relationship, and underlying cracks or strains in the relationship may become manifest. Husbands may unconsciously compete with the injured child for the mother’s limited resources. When couples are composed of persons with complementary coping styles, the stress of caring for a severely injured child may drive them to opposite extremes of reaction and threaten the relationship; for example, the father may bury himself in his work while the mother drops everything (including any attention to her husband) and devotes all her energy to the injured child. Parents may also find it difficult to appor- tion their time and energy to other children or to elderly parents whom they may care for. Even when they work well together around the crisis, parents may find their lives dominated by the needs of the injured child and may be in jeopardy of neglecting their own marital relationship (e.g., no longer spending time together separate from their children) or may be cut off from adult social activities with friends. When the injured child is an adult who had been living independently, parents often are thrown back into an The Family System 541 earlier developmental phase of caring for a dependent child, with the complication that the grown child resents and resists the dependency. This is an extremely difficult position for both parents and child, especially when the child is male, recently past adolescence, and striving for autonomy. Driving, independent living, dating, and establishing friends and intimate relationships become vol- atile family issues. Parents often have great difficulty ac- cepting the permanent changes in their children and in fact may complicate the rehabilitation process by refusing to give up unrealistic expectations (“My son will become a lawyer!”). Conflicts may develop between the parents over what is reasonable to expect of their adult child with brain injury. When adult children move back in with their parents for a period after a brain injury, it is not uncommon for old psychological terrain of the struggle for independence to be traversed again. How this was negotiated the first time around in adolescence is often predictive of how things will go the second time around. Sensitive cli- nicians can be extremely helpful to families during this period by normalizing the conflicts around independence and individuation and helping negotiate a series of com- promises that respect both the needs of the parents to be protective and the needs of the adult child to start regain- ing independence. Special issues attend the parent–school relationship for younger children through adolescents. These issues are addressed in the section Special Issues later in this chapter. Impact on Children Children of parents with brain injury face special problems over which they have little control. Younger children may suddenly find that they have lost the nurturance and guidance of a formerly loving and competent parent. The injured parent may be unpredictable, irritable, or even in competition with them for the uninjured parent’s attention. Older children at home usually have increased responsibilities, less attention from the other parent, and an awkward home situation into which they are uncom- fortable bringing their peers. Depending on the preexist- ing relationship, the child may be drawn emotionally closer to or driven farther away from and resent the injured parent. Older children may have more capacity to understand what has happened but also more freedom to create distance. It is not uncommon for school or behavioral problems to surface in children who are depressed, angry, or guilty about their new family situation. When an older parent incurs a brain injury, adult children who are out of the house are inevitably faced with the issue of taking on increased responsibility. Because of their own adult responsibilities, children are often limited in how much assistance they can actually contribute, with inevitable feelings of guilt. Adult children are often torn between the needs of their partners and children and those of their parents. Conflicts often develop between the caregiving adult child and his or her spouse, with re- sulting imbalance and conflict within the family. Conflicts can also erupt among siblings with an injured parent over perceptions of uneven participation in caregiving. Inter- ventions with spouses of adult children with parents with TBI are often the most effective way to stabilize the support system for the injured parent. Therapists need to be realistic, however, in assessing how much any one child is willing and able to give and help other siblings deal emotionally with perceived inequalities. Impact on Siblings With most attention being paid to the child with the injury, uninjured siblings often become unrecognized “victims” of shifts in the family system after TBI. When the siblings are young and living at home with the injured child, the parents characteristically reorient all of their attention and energy toward the child with the brain injury. Children who suddenly feel lack of attention from their parents often act out their needs in ways not initially seen as related to their sibling’s injury. This acting out may take the form of failing grades or getting into trouble at school. Parents need support in finding a balance in allocating limited resources among their children. Older children at home may, like children of injured parents, have more domestic responsibilities and perhaps also a socially awkward situation into which they are embar- rassed to bring friends. Siblings of different personality styles and relationships with the injured child may also respond in different ways; one sibling may become closer to the injured child while another moves away in anger. Older siblings who are not living at home experience stresses similar to those of adult children of injured parents. The demands of their own lives, perhaps including a spouse and children, compete against the need and desire to help their sibling. Typically, one adult sibling is desig- nated as the primary caregiver, especially if the injured sibling is unmarried and the parents are distant or too old to take on a primary caregiving role. Support from the sibling’s family is essential for him or her to play an effective role. Impact on Extended Family The impact of TBI on extended family networks is seldom discussed. The reality is that, especially in a mobile, 542 TEXTBOOK OF TRAUMATIC BRAIN INJURY urban society, kinship bonds often are more tenuous than they used to be, and aunts, uncles, and cousins seldom play a significant role in the primary care of any person with brain injury. (This does not hold in cultural groups in which a high value is placed on networks of extended families.) From our perspective, it is helpful for the nuclear family, whenever possible, to involve the extended family as early as possible in learning about the injury, the recovery process, and how to normalize the new person who emerges. Nuclear families who are able to tap into the support systems of extended families, even once or twice a year for respite, have a great advantage. Families often are unable to elicit the active support of relatives, however, because extended family members who do not live with the injured person often do not understand, are less sympathetic toward the family stresses, or are simply more wary of becoming involved. It is extremely useful for professionals working with families to include extended families in family meetings, especially early on, to establish a basis for a wider support network. Family Responses to TBI: Stage Theories The family’s process of adjusting to TBI evolves over time; it involves becoming aware of the nature, extent, and permanence of neurobehavioral deficits and reestablishing a new set of family roles, structure, and routines to adapt to these changes. Successful clinical intervention with families requires the professional to be aware of where in this process of adjustment the family is; this determines what the family is able to hear and what kind of support is needed. There are a number of useful ways to conceptualize the continuum of changes that families pass through. These are expressed as various stages, although it is clear that there is no objectively and universally true sequence. In discussing the effect of TBI on the family in the section Family Structure and Role Changes, we made reference to three main stages: the acute phase, the rehabilitation phase, and the integration phase. These stages are tied to a medically defined system of rehabilitation. In the acute phase, the family is dealing with issues of survival and minimizing the extent of physical and neurological damage. The family generally is suspending nor- mal routines and orienting all resources toward the injured person. In the rehabilitation phase, the medically stable person enters a phase of intensive treatment aimed at restoration of functioning at the highest level possible. This is a time when high expectations for recovery pre- dominate, and the family begins the task of receiving the injured person back into the family system and making the necessary structural adjustments. The rehabilitation may be on an inpatient or outpatient basis, but active treatment keeps open the possibility of unlimited improvement. The integration phase is the lengthiest and most difficult and involves integration in two senses. First, the injured person is completing formal treatment and is, as much as possible, becoming gradually reintegrated into the community (e.g., socially and vocationally). Second, this is a time of reintegration for the family system. Ex- pectations for complete recovery begin to recede as the reality of permanent neurobehavioral impairment in the injured person becomes apparent, and the family system attempts to strike a new, more permanent balance to allow its various members to proceed with their own lives. There is enormous variability during this final phase, which itself is composed of a series of stages of internal adjustment. A number of other authors proposed stage theories of family adjustment after TBI. Rape et al. (1992) described and analyzed a number of these. These authors identified six major stages incorporated in most (but not all) of the stage theories they analyzed. (These stages are listed in Table 30–3.) Rape et al. noted that the hypothesized stages lacked empirical validation, often failed to meet the criteria for defining explanatory epigenetic stages, and contained conceptual problems (e.g., why some families adapt whereas others become stuck at one of the stages). They proposed integrating a family systems perspective into stage theories to solve some of these problems, and they advocated longitudinal research. Prominent among the stage theories specific to TBI is Lezak’s (1986) six-stage model of family adjustment after TBI, which introduces subphases into the integration phase. After the injured person returns home, the family TABLE 30–3. Stages of family adjustment Initial shock Emotional relief, denial, and unrealistic expectation Acknowledgment of permanent deficits and emotional turmoil Bargaining Mourning or working through Acceptance and restructuring Source. Based on Rape RN, Busch JP, Slavin LA: “Toward a Concep- tualization of the Family’s Adaptation to a Member’s Head Injury: A Critique of Developmental Stage Models.” Rehabilitation Psychology 37:3–22, 1992. [...]... efforts of the Head Injury Foundation succeeded in a number of states, leading to legislation and executive orders addressing specific needs of TBI patients Among the first was the Statewide Head Injury Program of Massachusetts, established in 1 985 , which provided case coordination and training on TBI issues to 571 572 TABLE 32–1 TEXTBOOK OF TRAUMATIC BRAIN INJURY Spending by states for traumatic brain injury. .. Institutes of Health to conduct research on (A) development of new methods and modalities for the more effective diagnosis, measurement of degree of injury, post -injury monitoring and prognostic assessment of brain injury for acute, subacute, and later phases of care; (B) the development, modification, and evaluation of therapies that retard, prevent, or reverse brain damage after acute brain injury, ... not be reserved 544 TEXTBOOK OF TRAUMATIC BRAIN INJURY TABLE 30–4 A model of family assessment and intervention after traumatic brain injury Concentric circles of intervention Individual family members The family as a system Relationship of family to community Levels of intervention Individual Information and education Support, problem solving, and restructuring Formal therapy Stages of intervention Family... the decrease in TBI-related hospitaliza- TABLE 32–2 Conclusions of the National Institutes of Health consensus conference on traumatic brain injury (TBI) TBI is a heterogeneous disorder of major public health significance Consequences of TBI can be lifelong Given the large toll of TBI and absence of cure, prevention is of paramount importance Identification, intervention, and prevention of alcohol abuse... are needed The evaluation of TBI interventions will require innovative research methods Funding for research on TBI should be increased Source Reprinted from National Institutes of Health Consensus Development Panel on Rehabilitation of Persons With Traumatic Brain Injury: “Rehabilitation of Persons With Traumatic Brain Injury. ” Journal of the American Medical Association 282 : 981 , 1999 Used with permission... Association of America publishes a national directory of brain injury treatment programs, which is a valuable aid in locating appropriate local and regional treatment sites for individuals with TBI (Brain Injury Association of America 2004) Most state chapters of the Brain Injury Association of America have compiled supplemental information in state- and regional-level resource directories Some have staff devoted... form of either informal family and community organizations (e.g., churches) or TBI-specific self-help groups that provide services such as educational materials, support groups, and mentoring or family-to-family programs, all of which are useful and important However, in recent years, a variety of professional long-term community-based supports have become available In fact, as funding for short-term... family and to urge discussion of the issues with a lawyer as well Cultural Diversity No discussion of family intervention after TBI is complete without the inclusion of the role of cultural back- TEXTBOOK OF TRAUMATIC BRAIN INJURY ground, which in the broadest sense includes race, religion, ethnicity, language, socioeconomic status, and even sexual orientation Any or all of these factors may influence... (National Institutes of Health Consensus Development Panel on Rehabilitation of Persons With Traumatic Brain Injury 1999)? The panel’s conclusions are listed in Table 32–2 The published report contains a detailed bibliography well worth the attention of the interested reader The Traumatic Brain Injury Act of 1996 also mandated that the Centers for Disease Control and Prevention publish a study of the national... array of treatment is often unavailable for many patients because of lack of the specific clinical services in the geographical TEXTBOOK OF TRAUMATIC BRAIN INJURY area where the patient resides or, too often, because of lack of financial support (i.e., insurance and public reimbursement) for certain indicated elements or indicated duration of care Similar to the circumstances surrounding mental health services, . degree of burden. Note. For more information on subjective burden, see Brooks and Mc- Kinlay 1 983 ; Brooks et al. 1 987 ; Livingston 1 987 ; McKinlay et al. 1 981 . 536 TEXTBOOK OF TRAUMATIC BRAIN INJURY conflict. balance?”). Many of the main areas 5 38 TEXTBOOK OF TRAUMATIC BRAIN INJURY of inquiry are asked both of the person with the injury and a significant other. Specific sections are provided for impact on. intervention. Individual Family Community S u p p o r t , p r o b l e m s o l v i n g , r e s t r u c t u r i n g F o r m a l t h e r a p y I n f o r m a t i o n a n d e d u c a t i o n Acute care Rehabilitation Community reintegration 5 48 TEXTBOOK OF TRAUMATIC BRAIN INJURY wider than would initially be comfortable for the family. Family-to-family programs, self-help groups, family out- reach and advocacy,

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