Family Caregiving and Traumatic Brain Injury.
ABOUT THE AUTHOR
Charles Edmund Degeneffe, MSSW, ACSW, CRC, is a doctoral candidate in rehabilitation counseling psychology, University of Wisconsin, Madison, and is a project assistant, University of Wisconsin, Madison, Waisman Center. The author thanks Marsha Seltzer, professor of social work, for her editorial assistance and encouragement in the completion of this article.
|Article Type:||Statistical Data Included|
Social service (Research)
|Author:||Degeneffe, Charles Edmund|
|Publication:||Name: Health and Social Work Publisher: National Association of Social Workers Audience: Academic; Professional Format: Magazine/Journal Subject: Health; Sociology and social work Copyright: COPYRIGHT 2001 National Association of Social Workers ISSN: 0360-7283|
|Issue:||Date: Nov, 2001 Source Volume: 26 Source Issue: 4|
|Product:||Product Code: 9105134 Social Service Support-Families NAICS Code: 92313 Administration of Human Resource Programs (except Education, Public Health, and Veterans' Affairs Programs)|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
This article discusses the extensive challenges faced by those providing long-term care for family members with traumatic brain injury Areas reviewed include the nature of care needs, stress and burden experienced, and how families cope with care giving demands. This article concludes with a discussion of what social workers can do to reduce the demands of family Caregiving and subsequently, improve caregivers' quality of life.
Traumatic brain injury (TBI) represents a significant and growing disability classification in the United States. On an annual basis, an estimated 1.5 to 2 million people are injured. Among these, 70,000 to 90,000 experience long-term functional impairments (National Institutes of Health [NIH], 1999). Moreover, many who would have died in the past as a result of their injuries now survive because of advances in emergency health care technology (Cunningham et al., 1999). Also, TBI constitutes a major focus for social welfare and rehabilitative services. Lifetime costs of providing long-term care services per individual can exceed $4.5 million (Livneh & Antonak, 1997).
Although sizable public expenditures support the needs of people with TBI ,families provide most of the care (Allen, Linn, Gutierrez, & Willer, 1994; Knight, Devereux, & Godfrey, 1998), often without adequate professional support and intervention (Stebbins, 1997). As TBI can result in a variety of negative physical, cognitive, and psychosocial outcomes for affected individuals, it also affects the total family system. Family caregivers often experience anxiety, shock, disbelief, denial, and frustration (Mathis, 1984).
Social workers provide many needed services to these families immediately after injury as well as on a long-term basis (Lees, 1988). Immediate support needs often involve counseling to help adjust to the reality of the injury and its subsequent effects on the family system (Maitz & Sachs, 1995). Long-term care services focus on supporting families for the move of the injured person back into the home from either a hospital or a rehabilitation facility (Hosack & Rocchio, 1995).
Given its professional relevance, social workers need an awareness, understanding, and sensitivity to the unique needs of these caregivers. In doing so, their ability to accord more targeted, utilitarian, and cost-effective services maybe enhanced. An appreciation of the complexities of TBI family caregiving calls for a review of available research findings, clinical information, and advocacy recommendations. This article discusses family caregiving for people with TBI by addressing the nature of family caregiving, caregiver stress and burden, how family caregivers cope, and implications for social work practice.
THE NATURE OF FAMILY CAREGIVING
The assumption of a caregiving role presents challenges to the existing family system, influenced by such factors as types of support provided, role changes, and relationship patterns. To gain a beginning understanding of how families perform, and are affected by their caregiver functions, it is necessary to review potential cognitive, physical, and psychosocial effects of this type of disability for people with TBI.
Residual Effects of TBI
TBI is distinguished from other forms of brain damage in that an external force acts on the skull causing damage to the brain. Commonly, TBI is categorized both by the means of the injury as well as its severity (Cunningham et al., 1999). The brain can be damaged by both open and closed head injuries. Open head injuries occur when the skull and meninges (a protective layer of tissue and fluid surrounding the brain) is penetrated by an external object (for example, a bullet). With closed head injuries, the meninges is not penetrated (although the skull may be fractured). Closed head injuries are often the result of blunt force to the skull (for example, falls). This type of injury often results in more diffuse brain damage than found with open head injuries.
TBI severity is classified as either mild, moderate, or severe. The diagnosis is based on depth and length of coma, duration of posttraumatic amnesia, time to respond consistently, neuroimaging and electrophysiological studies, and measures of brainstem function. As severity levels increase, the range and extent of possible long-term physical, cognitive, and psychosocial impairments increases (Cunningham et al., 1999).
The range of possible impairments is extensive. The following review is not exhaustive but reflects major areas of potential dysfunction. Cognitive losses can affect memory, visual perception, attention, concentration, problem solving, abstract reasoning, planning, information processing, and organization (NIH, 1999). Physical effects may include hemiparesis, visual deficits, muscle spasticity, bowel and bladder dysfunction, seizures, and sensory impairment (that is, for touch, vision, pain, temperature, and position sense) (Lynch, 1986). Psychosocial changes following TBI can impact both behavior (for example, impulsivity, agitation, lability, withdrawal, and disinhibition) and personality (for example, depression, anger, denial, passivity, dependency, and low self-esteem) (Cunningham et al., 1999).
Individuals with TBI typically make the fastest and most significant rehabilitation gains (for example, return to work and independent living capacity) in the first six months after the injury (NIH, 1999). The rate of recovery is dependent on such factors as preinjury functioning capacities, age, level of unconsciousness, and magnitude of neurological damage. By 12 months post-injury, the rate of recovery slows considerably (Lynch, 1986). However, various therapeutic approaches have demonstrated success in addressing the negative functional effects of TBI, including compensatory training, behavior modification, and art and music therapy (NIH).
Although TBI severity predicts long-term functional capacities and rehabilitation potential (Corrigan, 1999; Cunningham et al., 1999; Lynch, 1986), the expression of this injury's effects are unique for each affected person. This is dependent on the specific area of the brain damaged (Lynch), as well as the presentation of various secondary mechanisms to the injury, such as cellular disturbances and infections (Cunningham).
Each person with TBI experiences this injury in a very specific and unique manner and subsequently requires different types of support and care. Thus, it can be assumed there is considerable heterogeneity regarding the type, duration, and extent of care families provide. Thus, a discussion of commonalties regarding TBI caregiving is somewhat difficult and complex. However, research and anecdotal information reflect several generalities regarding the characteristics of these families and the type of care they provide.
In its examination of the relevant literature, NIH (1999) reviewed demographic data concerning individuals with TBI in the United States. Their summary findings included the following:
* The peak age of acquiring a TBI occurs from 15 to 24 years of age.
* Secondary peaks in TBI incidence occur in the 65 years and older and five years of age and younger age groups.
* Men have twice as many TBIs as women.
* African Americans and other people of color have higher TBI incidence rates than white people.
* Several studies indicated a higher TBI incidence rate in rural versus urban areas.
* TBI incidence rates are lower for those with some college experience, compared with those with high school education only.
Also, TBI incidence increases as socioeconomic status decreases (Cunningham et al., 1999).
Based on clinical experience and a review of the literature, Sachs (1991) concluded that many of the victims of TBI have histories of learning difficulties, treatment for emotional maladjustment, dangerous work and leisure interests, and past drug and alcohol use. These problems occur at a higher rate than found in the general population. Motor vehicle accidents account for the largest cause of TBI (Cunningham et al., 1999), followed by falls (NIH, 1999). Other causes of TBI involve assaults, machinery-related accidents (Sachs), handgun use, child abuse, occupational accidents, and sporting activities (NIH). Drug and alcohol use is occasionally a contributing factor in the causes of TBI, especially with motor vehicle accidents. It must be considered, however, that families of all backgrounds can be affected by TBI, as it occurs to individuals of any age, gender, race, or nationality (Sachs).
Considerations for Care Provided
An initial consideration with how families provide care is understanding them in terms of age, race, socioeconomic status, income, and other distinguishing characteristics. However, there appear to be no comprehensive epidemiological data that filly describe the background of family caregivers of people with TBI. Epidemiological information is available regarding individuals with TBI. In understanding the backgrounds of people with TBI, various family characteristics can be extrapolated, albeit inconclusively.
A second consideration with how families provide care is understanding the type of care provided. As discussed earlier, there exists considerable heterogeneity regarding potential care needs of people with TBI. Hence, caregiving demands are unique for each family. Family caregiving includes help with activities of independent living (Family Caregiver Alliance, 1999) as well as assistance with other rehabilitation activities, such as advocacy (Jacobs, 1989) and cognitive rehabilitation (McKinlay & Hickox, 1988). The extent of care families provide can range from limited support (for example, assistance in using the telephone) to pervasive assistance in all areas of the injured family member's life (Family Caregiver Alliance).
In rendering care, families have numerous factors to consider. These factors often present challenges to caregivers' previous skill competence, patterns of living, and ways of relating to the person with a TBI. The challenges caregivers can encounter include monitoring medications (Eames, Haffey, & Cope, 1990), managing challenging behaviors (Rosenthal, 1989), adjusting to sexuality expression (Sachs, 1991), and responding to alcohol and drug use (Kreutzer, Witol, & Marwitz, 1996).
A third consideration in how families provide care is understanding its effect on the family system. The person with a TBI may lose functional ability needed to live independently, work competitively, interact socially, and meet other important personal and family needs in a preinjury manner (Hallett, Zasler, Maurer, & Cash, 1994). To fulfill these needs, various family members, including parents (Carson, 1993), spouses (Moore, Stambrook, Peters, & Lubusko, 1991), siblings (Orsillo, McCaffrey, & Fisher, 1993), and children (Sachs, 1991), can assume caregiving responsibilities. These responsibilities present changes not only in how family members relate to and view the injured family member, but also in how they view each other (Lees, 1988).
In adjusting to these role changes, each family member caregiver may face different concerns and challenges. Parents may face an extended parenthood, often at a stage when it is expected parenting responsibilities should lessen (for example, during retirement). Moreover, parents maybe tempted to undo or amend preinjury problems of the injured person and the family, such as drug dependency (Sachs, 1991). Also, parents may need to focus most of their time and energy on the family member with a TBI, so that other family relationships and needs become secondary priorities (Carson, 1993).
Domestic partners of people with TBI in committed, intimate relationships face the potential of living with someone who differs substantially in various preinjury characteristics. However, this research has focused only on those in heterosexual, married relationships (all subsequent references to this area of research are noted with the appellation "spouse"). Spouse caregivers face an adjustment to a marital relationship in which they have to make many decisions on behalf of their husband or wife with a TBI. They also often adjust to an ascribed single-parent status, as the injured spouse may be unable to perform traditional parental functions such as assisting children with homework (Sachs, 1991). Many spouse caregivers stay in the marriage relationship solely from a concern for the injured spouses' future (Jacobs, 1989).
Siblings of people with TBI can feel neglected by parents who focus most of their energies on the injured family member (Wesolowski & Zencius, 1994). Siblings maybe asked to perform additional family chores and often are expected to assume different roles within the family (for example, big brother to an older sibling) (Rosenthal, 1989). As the sibling relationship often presents the longest family bond (Cicirelli, 1982), the potential longevity of the caregiving role can be extensive. Subsequently, siblings frequently reveal great concern for the injured family member's future (Orsillo et al., 1993).
Along with other family members, children sometimes provide care to a parent with TBI. They also may be called on by the noninjured parent to provide assistance around the home (for example, housekeeping) (Wesolowski & Zencius, 1994). Children can experience anger toward the injured parent, often because of the injured parent's potential embarrassing behavior (for example, see Hardgrove, 1991) and the disruption the injury has on the child's developing sense of independence and autonomy (Sachs, 1991).
Caregiver Stress and Burden
Families of people with TBI face numerous challenges and stresses in providing care. They face living with and providing care for a person that in many ways is different from the person he or she was before the injury. The injured family member may demonstrate a variety of physical and behavioral care needs that make family caregiving especially stressful and burdensome. As families have been increasingly recognized as the primary caregivers for people with TBI, varied research has investigated the extent of stress and burden family caregivers experience. In fact, this focus has dominated TBI caregiver research over other important caregiving factors, such as coping strategies family caregivers use (Kosciulek, 1994).
As noted, TBI presents considerable variance in disability, in areas such as injury etiology, time since the injury, family background, caregiver resources, and type and extent of impairments. For the study of TBI caregiver stress and burden, this complexity presents challenges both for research methodology as well as for the summarization of outcomes in this body of inquiry.
STRESS AND BURDEN RESEARCH
A beginning challenge in conducting TBI caregiver stress and burden research is conceptually and operationally defining stress and burden. This can be difficult given the varied definitions of stress and burden that exist (Chwalisz, 1992; Livingston & Brooks, 1988). Moreover, responses to stressful events often vary from individual to individual, differing on factors such as personal appraisal of the stressful event and the efficacy and extent of coping strategies used (Quine, Lyle, & Pierce 1993).
A second challenge in conducting TBI caregiver stress and burden research is sample selection. Livingston and Brooks (1988) noted the likelihood of differences with elicited responses based on various characteristics associated with the injured person. These differences make interpretation of findings difficult. Samples often differ according to the following: cause of the injury, type of injury (for example, open versus closed head), severity of injury, outcome of the injury (for example, return to work), and age. For example, samples drawn from populations in which the cause of the TBI was a gunshot wound may present substantially different preinjury family functioning characteristics than in a situation in which TBI resulted from a motor vehicle accident.
To better conceptualize and investigate the multivariate nature of TBI caregiver stress and burden, researchers use several strategies. First, they may decide on either an objective or subjective focus (Chwalisz, 1992; Livingston & Brooks, 1988). Objective-based research identifies observable phenomena for the person with a TBI (for example, extent of physical care needs) and the caregiver (for example, changes in financial status or differences in social activities) as a means to indicate levels of stress and burden. Subjective-based research, however, addresses caregivers' perceptions of stressful events experienced in caregiving.
Second, the use of a theoretical model can assist researchers in selecting multiple objective and subjective variables to measure and interpret (Kosciulek, McCubbin, & McCubbin, 1993). One such model is McCubbin's Double ABCX model of family stress theory (Graffi & Minnes, 1989). In this model, multiple factors for predicting outcomes are conceptualized: stressor events (for example, a family member has a TBI and family loses primary source of income); social, psychological, interpersonal, and material resources available to respond to stressor events; and the family's appraisal of its ability to respond to stressor events.
Third, TBI family caregiving researchers increasingly use sophisticated statistical techniques, such as multiple regression and multivariate analysis. By doing so, researchers work toward controlling experimental error; they can more effectively investigate multiple relationships among relevant variables (Kreutzer, Marwitz, & Kepler, 1992).
Fourth, TBI family caregiving research commonly incorporates standardized measures to measure stress and burden (Livingston & Brooks, 1988). Use of such measures produces outcomes that are based on more psychometrically sound data (Kreutzer et al., 1992) and permits comparisons with reference populations (Livingston & Brooks, 1988). Examples of standardized measures used in TBI caregiver stress and burden research include the Brief Symptom Inventory (Kreutzer, Gervasio, & Camplair, 1994), the Subjective Burden Measure (Sander, High, Hannay, & Sherer, 1997), and the Leeds Scales of Depression and Anxiety (Mintz, Van Horn, & Levine, 1995).
Fifth, TBI family caregiving research also has been enhanced through use of qualitative research approaches. Jacob (1993) noted the contributions of qualitative methods in such areas as understanding the perspectives of research participants, conducting research in naturalistic settings, and approaching research without preconceived theories and opinions. Through these contributions, qualitative research methods have increased understanding of families of people with TBI. Examples of qualitative methods used in TBI family research include typological content analysis (Chwalisz & Stark-Wroblewski, 1996), phenomenology (Johnson, 1995), and grounded theory (Carson, 1993).
SUMMARY OF RESEARCH OUTCOMES
Research on caregiver stress and burden often focuses on two areas of inquiry: (1) identifying predictors of stress and burden and (2) examining stress and burden for particular family caregivers, such as parents and spouses. Quite often, TBI caregiver stress research combines these two areas of concentration. With the conceptually complex and multivariate nature of TBI caregiver stress and burden research, declaring known conclusions across all research contexts is not possible. However, several generalities have been identified.
Overall, research indicates family caregivers frequently face high levels of stress and burden that often do not lessen with time (Douglas & Spellacy, 1996; Kreutzer et al., 1992). This outcome distinguishes TBI caregiving from other areas of family caregiving, where these levels can decrease with caregiving tenure, such as for aging parents of people with mental retardation (Greenberg, Seltzer, & Greenley, 1993). Studies also find that injury severity often fails to predict caregiver stress and burden beyond three months postinjury (Sander et al., 1997). Research reviews indicate factors found to be most predictive (Chwalisz, 1992; Douglas & Spellacy, 1996; Kreutzer et al., 1992; Sander et al., 1997) of caregiver stress and burden include caregiver age, caregiver gender, preinjury caregiver psychopathology, family financial burden, coping resources used, social support available, and caregiver perceptions of impairment severity.
Researchers focusing on stress and burden for particular family caregivers often investigate effects on singular family members (for example, spouses only) or compare effects among different family members. The majority of this research has focused on parents and spouses, with few studies on siblings and children (Orsillo et al., 1993; Pessar, Coad, Linn, & Willer, 1993).
In their review, Gervasio and Kreutzer (1997) noted that research investigating effects on multiple family member caregivers has largely produced contradictory findings, often the result of methodological difficulties and inconsistencies. For example, Gervasio and Kreutzer noted that research conducted by Livingston, Brooks, and Bond (1985) on spouse and parent caregivers failed to find differences on measures of anxiety and depression. However, Leathem, Heath, and Woolley (1996) investigated role change and stress, using the Hassles and Uplifts Scale, for 18 parent and 11 spouse caregivers of people with TBI. The authors found that spouses exhibited higher stress levels, role changes, and health problems than parents. Similarly, Gervasio and Kreutzer found that 69 spouse caregivers had higher stress levels on the Brief Symptom Inventory than 47 parents giving care.
As with multifamily member studies, research focusing on specific family members often finds high levels of stress, burden, and other negative outcomes. Linn, Allen, and Willer (1994) found that 60 spouse caregivers of people with TBI exhibited elevated levels of depression and anxiety on the Symptom Checklist 90-Revised. Orsillo et al. (1993) determined that 13 siblings of people with TBI showed significant levels of psychological distress on the Brief Symptom Inventory compared with norms. These siblings also felt they were poor problem solvers. Pessar et al. (1993) observed 24 children of families in which one parent had a TBI. Children in the study were born before their parents' injuries. After the parent's TBI, children demonstrated significant problem responses, including poor relationship with the injured parent, acting-out behavior, and emotional problems.
HOW FAMILY CAREGIVERS COPE
The findings discussed in the preceding section imply that families are predestined to have negative experiences in their caregiving roles. An important consideration for social work intervention, however, is the heterogeneity of coping resources and strategies family caregivers possess. Both clinical information (Jacobs, 1989) and research data (Kosciulek, 1994) indicate coping efficacy can significantly affect the quality of the caregiving experience.
In a variety of ways, family caregivers indicate their coping capacities. Coping efficacy can be reflected by indirect means, such as how families communicate with professionals (Lees, 1988). Family adaptation and coping occurs immediately after a TBI as well as on an extended basis. Immediately after TBI, families often demonstrate a variety of grief reactions when trying to come to terms with the reality of the injury. Many families first experience denial of the injury's consequences for the affected family member (Rosenthal, 1989; Sachs, 1991). Later grief reactions can include depression, anger, and anxiety (Brooks, 1991). Muir and Haffey (1984) suggested that TBI family grief reactions occur in a similar manner as the death grieving model described by Kubler-Ross. However, they characterized TBI family grieving with the term, "mobile mourning' as the person with TBI may never fully regain pre-injury functional capacities. Subsequently, families can experience the grieving processes repeatedly.
After the acute injury stage, however, families faced the long-term reality of adapting to the family member's TBI. Family caregivers vary in their ability to cope with this adjustment. On a long-term basis, differences in adaptation and coping efficacy are often functions of preinjury family characteristics (Wesolowski & Zencius, 1994) as well as the ability to reach out to coping resources outside of the immediate family system (Jacobs, 1989; McKinlay & Hickox, 1988).
Preinjury Family Characteristics
Sachs (1991) noted that well-functioning families share several common characteristics such as strong cohesion, understood identity, firm boundaries, and open communication. The presence of TBI in such families can strain their considerable coping resources. Unfortunately, however, families deficient in preinjury coping capacities are often the most affected by TBI. Livingston and Brooks (1988) referred to such families as vulnerable families. They stressed that families with vulnerabilities often have backgrounds of significant social and personality dysfunction and generally lack many of the qualities of well-functioning families. Potentially, the onset of TBI can destroy families with vulnerabilities as a working unit (Wesolowski & Zencius, 1994).
Given preinjury family functioning characteristics, families with vulnerabilities may face increased risk of stress and burden when rendering care. These characteristics can influence how families interpret and react to the various behaviors and impairments the injured family member might express. For example, in responding to challenging behaviors from the injured family member, Sachs (1991) noted difficulties families might encounter if they traditionally have struggled to express emotion. Sachs stated, "The family's reaction to the behavior problem may be affected by what they believe is communicated by the behavior. For example, noncompliant and aggressive behaviors are often interpreted as expressions of anger. Families that tend to suppress expression of anger may show a different emotional reaction to such behavior than would families that expressed anger more freely" (p.21).
In two studies Kosciulek (1994, 1996) investigated relationships between family functioning characteristics and ability to cope with TBI caregiving stresses. In both studies, he measured extent of family adaptation to TBI as indicated on the Family Assessment Device (FAD) (Kosciulek, 1996). The FAD is a 60-item questionnaire that assesses the following areas of family functioning: problem solving, communication, roles, affective involvement, affective responsiveness, and behavior control. The FAD generates scale scores for each of these areas. The FAD also assesses overall family functioning on the General Functioning Scale.
In his 1994 study Kosciulek examined family coping styles and their relationship with family adaptation to TBI using the Frequency of Coping Behaviors Scale. Participants were 150 primary caregivers of family members with TBI in Wisconsin. From cluster analysis of participant responses on the Frequency of Coping Behaviors instrument, Kosciulek identified the following coping behavior variables: positive appraisal, resource acquisition, family tension management, head injury demand reduction, and acquiring social support. Using stepwise regression analysis of these variables on FAD General Functioning Scale scores, positive appraisal and family tension management were found to best predict family adaptation.
In his 1996 study Kosciulek looked at the relationship between family cohesion after TBI with family adaptation and communication style. Participants were 82 primary caregivers of family members with TBI in Georgia. Family cohesion was measured on the Family Adaptability and Cohesion Evaluation Scale II (Olson, Bell, & Portner, 1990), an instrument that identifies "balanced" and "extreme" cohesion types. Cohesion was defined as the extent of emotional bonding family members express to each other. FAD General Functioning and Communication Scale scores indicated family adaptation and communication style. Families with balanced cohesion indicated significantly better family adaptation and communication style compared with those with extreme cohesion.
Use of External Family Resources
Beyond internal family functioning characteristics, an ability to gain access to and use support resources also differentiates coping capacities among families affected by TBI--services, information, and people outside of the immediate family structure of mother, father, and children. External family coping resources have been identified in research asking family members what they need to enhance coping efficacy. For example, Kreutzer, Serio, and Bergquist (1994) administered the Family Needs Questionnaire (FAQ) to 119 family members of people with TBI. The FAQ is a 40-item instrument that measures family members' perceived needs after a relative's TBI. The majority of respondents were primary caregivers (83 percent). Also, respondents were often mothers (39 percent) and wives (75 percent). Findings indicated that family members need honest and accurate information from professionals. Moreover, in their attempts to provide care for their injured relatives, family members reflected a need for professional dire ction, support, and respect.
Consistent with findings of Kreutzer, Serio, and Bergquist (1994) were outcomes of a phenomenological study by Johnson (1995). Johnson described family reactions and needs after the acute onset of TBI for her nephew Nathan. Among reactions expressed by Nathan's parents and siblings was a need for accurate information from professionals regarding Nathan's prognosis as well as active involvement with his medical care management.
External family caregiver coping resources can take a variety of forms, including social support, professional services, and involvement in the rehabilitation process. Social support refers to assistance that in some way mitigates the stresses and burdens of providing care (Chwalisz, 1992). Social support entails aid to family members in such areas as caregiving responsibilities, empathy, information, and advice (Greenberg, Seltzer, Krauss, & Kim, 1997). It is commonly provided by friends and extended family (Lees, 1988).
However, with the presence of TBI, primary caregivers can face isolation from friends and family, especially when the injured family member experiences behavioral problems (Wesolowski & Zencius, 1994). Subsequently, primary caregivers often turn to support groups, a growing resource for caregivers of varied populations such as people with developmental disabilities, chronic mental illness, specific medical conditions, and addictions (Rosenthal, 1989; Sachs, 1991). For family caregivers of people with TBI, the Brain Injury Association, Inc. (BIA), coordinates a national network of support groups in states and cities throughout the United States (Lynch, 1986). BIA can offer social workers a valuable source of information and organization for conducting advocacy efforts. Its national, state, and local chapters are regularly involved in campaigns to improve the quality and quantity of TBI services (Jacobs, 1989). Moreover, it promotes increased use of state demonstration projects to improve access to health and other support services. BIA (2000) contended that among those with disabilities, people with TBI often receive fewer benefits from programs, including social security, Medicare, and Medicaid. BIA also suggested that people with TBI often have less access to services and protections through the Individuals with Disabilities Education Act and the Americans with Disabilities Act.
The second coping resource family caregivers can use, the TBI professional community, offers a range of services that reduce the stresses of caregiving and improve quality of life for both caregivers and family members with TBI. Supportive counseling often helps families better manage feelings of loss and helplessness. Family therapy can address issues of preinjury, maladaptive family functioning (Rosenthal & Young, 1988). Respite care offers an opportunity for caregivers to rest and re-energize their capabilities to provide extended care (Wesolowski & Zencius, 1994). Finally, TBI transitional living and independent living programs provide options outside of family caregiving to meet the needs of injured family members (Sargent, 1997).
The third way caregivers can cope, through involvement in the rehabilitation process, may facilitate feelings of empowerment, rather than helplessness, in helping family members with TBI live with and adjust to their injuries (Jacobs, 1989). TBI professionals enhance involvement by providing information and engaging in partnerships with family caregivers.
Informational materials help family caregivers make more informed decisions regarding the care and rehabilitation needs of family members with TBI. Resources including handouts, articles, books, and pamphlets (Wesolowski & Zencius, 1994) often focus on the nature of brain injury, specific deficits related to sites of brain damage, and how the rehabilitation process facilitates recovery from TBI (Rosenthal, 1989). Moreover, BIA's state and local chapters offer staff consultation, information, and referral services for family caregivers (Lynch, 1986).
As the needs of people with TBI are varied and complex, opportunities for professional and family partnerships in providing rehabilitative care are numerous. These partnerships can benefit both parties. Professionals benefit from the intimate knowledge families have of their injured family members. Families benefit from the years of specialized skill and training that professionals possess. Often in these partnerships, professionals provide caregivers with training and consultation regarding how to perform various rehabilitative roles. Partnerships have occurred in behavior control (Rosenthal, 1989), service coordination (Jacobs, 1989), and physical care management (Wesolowski & Zencius, 1994).
Little research, however, has investigated the efficacy of working in professional partnerships with family caregivers of people with TBI. An exception concerns the work of McKinlay and Hickox (1988). They evaluated the effectiveness of training family caregivers to treat their injured family members' memory and anger control problems. Caregivers included two wives, a set of parents, and a son. The four people with TBI ranged in age from 16 to 60 years. All had a diagnosis of severe head injury. Caregivers accompanied the injured family member to therapy sessions and received training on how to provide treatment. Two caregivers (cases 1 and 2) treated memory impairments, whereas the other two (cases 3 and 4) addressed anger management. Both caregivers and injured family members recorded baseline and treatment data via checklists. In Cases 1 and 2, people with TBI demonstrated meaningful improvement with memory skills. There was no improvement in anger control for case 3. However, in case 4, there were no ange r problems recorded the second half of treatment (that is, 9 1/2 weeks).
IMPLICATIONS FOR SOCIAL WORK PRACTICE
The preceding discussion demonstrates that families of people with TBI are not predestined to experience high levels of distress in performing their caregiving roles. Through the use of efficacious coping strategies and resources, families have viable options to mediate the stresses and burdens of caregiving. However, the reality for most families is that caregiving exerts a considerable toll. As professionals who offer a variety of supportive services to families of people with TBI, social workers need a commitment to improving caregiver experiences and quality of life. Social workers can meet this challenge through enhanced advocacy, professional preparation, and research.
As noted earlier, families provide care for people with TBI often out of necessity rather than choice. Currently, the system of community-based services and supports for people with TBI and their families is largely fragmented, inaccessible, and insufficient (Spivack, 1994). This conclusion is based largely on anecdotal information and individual case studies, but not empirical research (DeJong, 1999). The exception is the study by Kreutzer et al. (1994) on needs of family caregivers of people with TBI, which found that frequent areas of unmet need included respite, supportive counseling, and caregiving training.
To address the shortcomings in services, social workers need to advocate at the local, state, and national levels. Through such advocacy social workers can make policymakers and program planners better understand needs and challenges faced by families affected by TBI. Given their professional experience and proximity to the daily realities of living with TBI, social workers are in an excellent position to advocate for needed services. As Spivack (1994) noted, "Only public pressure, driven by those who have a personal or professional stake, will move governments to act to reprioritize their agendas in order to make TBI a high public health priority" (p. 93). To better address the needs of people with TBI and their families, BIA (2000) stressed the need for further prevention research and development of better methods for TBI diagnosis and management.
Second, the needed skill and knowledge regarding TBI may not have been acquired during baccalaureate and master's level social work education. Most social work programs appear to have limited coverage of disability issues. For example, Quinn (1995) conducted research regarding the extent of disability-related content in master's social work programs in the United States. Course descriptions from 93 of 115 schools contacted reflected a lack of disability-related content. The number of courses containing any disability-related content was quite small; courses on micro practice ranked highest, with 27 having such content.
It is unknown to what extent information on TBI is addressed in social work education because no relevant empirical studies were identified. Nevertheless, social workers in TBI services can benefit from extensive preprofessional training as well as continuing education specific to the needs of people with TBI and their family caregivers.
Social workers require training in multiple domains to provide supports such as counseling, service coordination, and advocacy effectively. Areas noted by Sachs (1991) include medical aspects, neuropsychological sequelae, psychological dimensions, cognitive rehabilitation, self-help resources, disability legislation, family issues, and behavior management. Moreover, social workers should be aware of allied services that can reduce the demands of caregiving such as day treatment, home health support, substance abuse programs, and vocational rehabilitation (Cunningham et al., 1999).
Finally, the social work profession needs a stronger commitment to understanding the challenges, dimensions, and best practice approaches regarding family caregiving for people with TBI.
SOCIAL WORK LITERATURE
The majority of published articles with a focus on disabilities and research on disabilities have appeared in brain injury, rehabilitation counseling/ psychology, and nursing journals and books. Gilson, Bricout, and Baskind (1998) conducted an electronic search of Social Work Abstracts for the years 1989-95. Over this six-year period, only 114 social work journal articles were identified as having a disability focus.
Both in clinical practice and research, the social work profession possesses a rich tradition of addressing issues relevant to family caregiving for people with TBI in such areas as family systems, social support, social policy, psychological distress, racial and ethnic diversity, and coping with stressful and traumatic events (Hepworth & Larsen, 1990). Therefore, social work researchers should consider lines of research in areas currently deficient in the TBI caregiving literature.
Comprehensive reviews (Chwalisz, 1992; DeJong, 1999; Kreutzer, 1999; Kreutzer et al., 1992) have made recommendations for methodology to improve TBI family research, including longitudinal designs, measurement instruments more psychometrically sound, larger sample sizes, samples with diverse ethnic backgrounds, and multicenter sample comparisons. Moreover, these reviews noted areas that need further inquiry, including the study of family members other than primary caregivers, extent of access to TBI services, marital stability and psychosexual changes after TBI, effects of mild and moderate TBI severity on caregiving, effects of TBI on fathers and children, and outcomes of caregiver coping interventions.
In addition to these suggestions, future research also needs to examine families with gay, lesbian, and unmarried, cohabiting domestic partnerships. TBI family research has ignored the effect of TBI on these types of unions. It should not be assumed that research findings on married, heterosexual relationships similarly apply to other domestic relationships.
The needs of people with TBI and their family caregivers are complex and at times extensive. TBI represents a disability that has many different causes and can result in a multitude of different outcomes and consequences. Social workers support individuals with TBI and their families through various professional roles and functions. However, more needs to be done. Many family caregivers of people with TBI experience significant stress and burden and are not able to use coping strategies and resources effectively. As the incidence of TBI grows in the United States, social workers have a responsibility to enhance their efforts to better understand the nature of this problem and to work toward creating systems that will benefit people with TBI and their caregivers. HSW
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