Mark Sherer and Angelle M. Sander (eds.)Clinical Handbooks in NeuropsychologyHandbook on the Neuropsychology of Traumatic Brain Injury201410.1007/978-1-4939-0784-7_14
© Springer Science+Business Media, LLC 2014
Treating and Collaborating With Family Caregivers in the Rehabilitation of Persons with Traumatic Brain Injury
(1)
Physical Medicine and Rehabilitation, Baylor College of Medicine and Harris Health System, Houston, TX, USA
(2)
Brain Injury Research Center, TIRR Memorial Hermann, Houston, TX, USA
Abstract
Family members are an important source of support for persons with traumatic brain injury (TBI) during the recovery process and are potential partners in the rehabilitation process. Unfortunately, family members often experience substantial emotional distress and disruption of family functioning. These difficulties can impact the rehabilitation process and the recovery of the person with injury. Understanding the problems faced by family members and potential ways to assist them in helping the person with injury to achieve maximum functioning is important for neuropsychologists working in the area of TBI. The current chapter begins with an overview of the types of difficulties faced by family members in the acute and chronic phases of TBI. Next, an overview will be provided of the ways in which neuropsychologists can work with family members in different treatment settings including acute care, inpatient rehabilitation, post-acute rehabilitation, and private practice. For each setting, case examples are provided to describe the role of the family in treatment and how the neuropsychologist can meet family members’ needs and involve them as partners in the rehabilitation process. The chapter ends with additional tips for working with family caregivers after TBI, along with a sample of educational resources that can be distributed to family members.
Keywords
CaregiversFamily membersWorking with family membersRehabilitation with caregiversOverview of Impact of TBI on Family Caregivers
Over three decades of empirical work leaves no doubt that traumatic brain injury (TBI) results in significant distress for family caregivers. Emotional distress, including depression and anxiety, has been documented during the first year following injury and as long as 7 years after injury [1–10]. While injury-related impairments in the person with TBI often improve over time, caregivers have been shown to experience increased distress over time [11, 12]. This distress is manifested in a variety of ways, including increased seeking of mental health services and use of alcohol and sedative drugs [13]. Approximately one-third of primary caregivers of persons with TBI report clinical levels of pre-injury emotional distress, which may make them especially vulnerable to poor adjustment following injury [14]. Indeed, caregivers with a pre-injury history of treatment for psychological difficulties have been shown to report greater emotional distress at 1 year following injury [15].
Research has also documented the negative impact of TBI on family relationships. Caregivers have reported disruption of normal family functioning following TBI, including decreased communication, blurring of family roles, and decreased sharing of warmth and affection [4]. These changes may be partially related to cognitive and behavioral impairments in the person with TBI, but can also be a result of injury-related changes in family schedules, finances, and lifestyles. For example, financial stress may occur when the person with injury is not able to resume working. This can result in other family members working extra jobs, which leads to reduced family time. This situation can also lead to feelings of resentment for some family members and guilt for others, which can further strain relationships, resulting in a disruption of normal family functioning.
The marital relationship has been shown to be particularly vulnerable to negative consequences based on TBI, with spouses of persons with TBI reporting substantial levels of distress [16–18]. This distress is related to altered dynamics of the relationship (e.g., spouse in a dependent role), as well as role strain resulting from the uninjured spouse resuming a larger number of financial and household responsibilities [19]. Emotional and behavioral changes in the person with injury have been noted as a primary factor contributing to spousal distress [20, 21], and many spouses report feeling as if they are married to a stranger [19]. Reduced physical and emotional intimacy [22], as well as more negative perceptions and interactions within couples’ relationships [23], have been documented. These changes can lead to reduced marital satisfaction [19, 23], reduced relationship quality [12], and eventually to separation or divorce [24, 25].
Due to the fact that TBI occurs disproportionately in younger people, it is not uncommon for persons with TBI to be single at the time of injury. In these cases, a parent may be the primary caregiver. There is some evidence that parents adjust better to the role of caring for a person with TBI as compared to spouses [16–18]; however, this finding has not been consistent across studies and parents have been noted to have emotional distress following injury [3, 5, 6]. Parents are often elderly and/or retired and may have limited resources to care for an adult child with injury. Furthermore, caring for an adult child with TBI may result in disruption of existing roles and boundaries as the adults were likely functioning independently of parents before injury and may now be in an unanticipated role of dependency. Conflicts between independence and dependence can be particularly stressful in these situations as the parents of an adult with TBI may have to restrict activities of their child due to cognitive or behavioral impairments.
While there is no research on the impact of parental TBI on children in the family, it is difficult to imagine that the children are unaffected. Children may experience substantial emotional distress including fear for their own safety and that of their parents, depression and anxiety regarding changes in their parent with injury, anger or resentment regarding decreased attention from one or both parents, and uncertainty regarding their futures. Children in this situation may become depressed or may act out behaviorally. This can result in increased stress on the family system.
Importance of Addressing Family Caregiver Needs in the Context of Providing Neuropsychological Services Following TBI
For persons recovering from TBI, family members or caregivers can play a crucial role in following through with recommended strategies and services and can contribute to positive outcomes for the person with TBI. Researchers have documented that caregiver distress and unhealthy family functioning are related to worse participation outcomes for persons with complicated mild to moderate injury [26] and that poor progress in post-acute rehabilitation is predicted by unhealthy family functioning [27] and caregiver emotional distress [28]. This is likely because family caregivers experiencing distress are less able to provide a supportive environment to facilitate the ability of the person with TBI to compensate for injury-related impairments and to assist with resuming activities in the home and community. Neuropsychologists who work in rehabilitation settings treating persons with TBI can facilitate positive outcomes by engaging family caregivers in treatment. This is particularly the case when teaching strategies to compensate for cognitive impairments such as those in attention, memory, and executive functioning (e.g., planning, problem-solving, self-regulation). The length of stay in rehabilitation programs is typically brief and family members can assist with generalizing the strategies to everyday activities in the home and community. Even neuropsychologists who do not work in a rehabilitation setting will have reason to engage family members. While some neuropsychologists still work in settings where testing is used solely for diagnostic purposes, this is becoming much more rare. It is typical for referral sources to request recommendations for improving function in the face of cognitive impairments. Given that most persons with TBI have impairments that may make it difficult to recall and independently follow through with recommendations, providing feedback to family members is an important method of providing comprehensive care. Family members who are physically and mentally healthy are more likely to follow through with recommendations.
Family Caregiver Needs
Kreutzer and colleagues completed a series of studies documenting the needs of family caregivers at various time points following TBI [29–31]. Their findings provided evidence that the priority rated as most important by family members was the need to receive medical information and education on the physical, cognitive, and emotional/behavioral changes associated with TBI. Family members expressed a desire to have this information presented honestly and in language that they could understand. This series of studies also investigated the extent to which family members perceived their needs as being met. While family members largely reported their needs for information as being met, they reported needs for emotional support and instrumental support (e.g., help with practical things like housekeeping) as primarily unmet. These needs were reported as unmet by most family members up to 2 years post-injury. This is significant, as unmet needs are related to greater distress for caregivers [32]. Understanding caregiver needs and accurately assessing their emotional functioning is important for neuro-psychologists in order to facilitate appropriate referrals and to maximize the likelihood that the person with TBI will benefit from recommendations and/or treatment.
Neuropsychologists’ Roles in Treating and Collaborating With Family Caregivers
The role of neuropsychologists in working with family caregivers can differ by setting. Therefore, the roles will be discussed in reference to inpatient/acute trauma, inpatient rehabilitation, post-acute rehabilitation, and private practice settings.
Inpatient/Acute Trauma Setting
The inpatient acute trauma experience is a particularly difficult one for family members. The catastrophic nature of the injury is usually emotionally overwhelming, and family members can be confused about the information that they are often bombarded with from neurosurgeons and the rest of the trauma team. Particularly in the initial days following injury, their emotions may be up and down. They may move from fear over the possibility of losing their loved one, to joy over their survival, to concern for their post-injury functioning. The role of the neuropsychologist during this phase is to provide early education and emotional support to the family. Initial education should be brief, as family members may have difficulty processing and recalling detailed information when they are under such emotional distress. Simple information on how the brain is affected by TBI and why certain medical procedures are being performed should be provided in language that they can understand rather than in medical or psychological jargon. Emotional support should be provided as needed.
The need for education becomes more intensive as the person with TBI emerges from the critical period, regains consciousness, and moves from the neurosurgery critical care unit to a regular hospital floor. At this point, family members may be surprised and confused by some common TBI-related behavior. For example, many persons with TBI demonstrate a phase of agitation, which can result in them pulling out medical tubes and devices and, in some cases, physically lashing out at treatment staff and/or family members. The neuropsychologist is often the professional who is best equipped to explain this behavior to family members as a normal part of the recovery process, to educate them on the temporary nature of these symptoms, and to advise them on ways to help reduce the agitated behavior by maintaining reduced stimulation in the environment, limiting the number of visitors at any one time, speaking quietly, and avoiding surprise approaches.
Family members are also confused by the period of posttraumatic amnesia or confusion that typically follows in the hours, days, or weeks after injury. They do not initially understand why their loved one seems to be unaware of the passage of time or is unable to hold on to information from one moment to the next. Education and reassurance that these symptoms will resolve over time is important. Neuropsychologists can play an important role during this time by tracking patients’ emergence from posttraumatic amnesia and informing family members of progress. Family members should also be educated on what information to provide patients with while they are in the stage of posttraumatic amnesia. The following case demonstrates how confusing posttraumatic amnesia can be for family members and the role that the neuropsychologist can play in helping them through it.
MP was a 20-year-old woman who sustained a TBI in a motor vehicle accident. Her boyfriend of 2 years was the driver of the vehicle and did not survive. MP remained in coma for 6 days. When she emerged from coma, she was moved to a regular hospital floor and was able to move around, consistently follow commands, and communicate her needs. She was not able to recall that she had been in a motor vehicle accident and did not hold on to the information when it was explained to her. She intermittently realized that she was in a hospital, but at times, thought that she was in the college dormitory where she had resided prior to injury. She repeatedly asked her parents where her boyfriend was and why he was not visiting. Her parents were confused by her inability to recall events and were distressed about having to tell her that her boyfriend had passed away. The neuropsychologist explained why MP was experiencing confusion and let the parents know that this is a normal stage of recovery that would resolve over time. As she was unable to retain information told to her and was in the very early stages of recovery, the neuropsychologist advised the family to redirect her attention when she asked about her boyfriend. This action would avoid the parents having to experience the distress of retelling the story to her on multiple occasions and also avoid distressing MP at a time when she did not have the cognitive capacity to process the news. Fortunately, MP was easy to redirect, which the neuropsychologist was aware of based on their interactions. Over the following two weeks, MP emerged from posttraumatic amnesia and began to recall that she had been at a party with her boyfriend and they had gotten in the car to drive home. At that point, the neuropsychologist advised her parents that it was appropriate to inform her of her boyfriend’s death and provided emotional support during the process.
A subset of persons with TBI remain in a vegetative or minimally conscious state for an extended period of time. The neuropsychologist’s role for these families is to provide education related to the prognosis for recovery in patients with prolonged duration of unconsciousness and to assist them with decision-making regarding post-rehabilitation placement. Family members making these decisions will need counseling to manage their grief and distress and to avoid guilt and self-blame if they decide that they are unable to provide in-home care. In cases where family members decide to care for a person in vegetative or minimally conscious state at home, the neuropsychologist can assist with developing a plan for daily physical and cognitive stimulation. The neuropsychologist can also provide information on resources and referrals that family members may need to sustain care in the long term.
Inpatient Rehabilitation Setting
Many patients with TBI who receive inpatient rehabilitation services do so within the first 6 months of recovery. This is also the most rapid period of recovery, when persons with TBI tend to show frequent improvements in physical, cognitive, and emotional functioning. Family members often react to this rapid recovery with great hope for the future. Their initial distress can turn to happiness and enthusiasm for each step that the person with TBI takes toward improvement. While this is a positive outlook for family members, it can sometimes be an obstacle for preparing them adequately for discharge. They are often under the impression that the current rate of improvement will continue until the person with TBI achieves their pre-injury level of function. Such a belief may render them unlikely to fully process and/or retain information on the problems they may face following discharge. Many rehabilitation staff members talk about family caregivers being in denial when they hold onto these hopes for the future and appear to ignore advice regarding long-term problems. It is important to recognize that family members are reacting to what they are seeing and experiencing on an everyday basis, and that they may not be at a stage where they can process information that is inconsistent with their observations. Furthermore, many family members have developed a distrust of medical advice based on dire prognosis that they may have received from neurosurgery staff during the acute hospital stay. Family members who were told that their loved ones would never walk or eat on their own, yet witness them doing these very things, may come to believe that medical providers always give the worst case scenario and that their loved one is the exception to the rule. This can be a powerful belief to overcome, as it provides them with much-needed hope.
During this phase of in-patient rehabilitation, the neuropsychologist should monitor the daily cognitive and emotional progress of the person with injury. Serial assessment of the changes in cognitive and emotional status by a neuropsychologist can provide important information to family members, as well as to members of the interdisciplinary rehabilitation team, regarding how to improve function and to increase potential to benefit from therapy. The neuropsychologist should meet with each patient’s family members at least weekly to provide education on progress. Family members also benefit from advice on how to interact with their loved one to maximize success. This is especially the case when the person with injury exhibits difficult to manage behaviors such as agitation or disinhibition. Family members often have difficulty understanding the impaired awareness of deficits that is typical in the early stages of recovery following TBI [33, 34]. The fact that the person with injury may seem unbothered by decreased abilities and may even argue about their existence can be confusing and stressful for family members. The neuropsychologist can assist by providing education about the cause and prognosis for impaired awareness. The neuropsychologist can also assist family members in determining ways to assist the person with injury in becoming more aware of problems and how to cope with them. The following example illustrates the role of the neuropsychologist in this process.
RH was a 19-year-old Hispanic man who sustained a gunshot wound to the right frontal lobe during an attempted car-jacking. He was admitted to a comprehensive inpatient unit for rehabilitation of physical and cognitive deficits. Neuropsychological evaluation revealed impairments in left hand motor speed and dexterity, organization of visual scanning, learning and retention of word lists, abstract verbal reasoning, and higher level problem-solving. He also sustained mild left-sided weakness that impacted balance. He was cooperative and communicated in a polite manner with the hospital staff. His parents were pleased with the progress he was making; however, they expressed distress regarding his seeming unawareness of his cognitive deficits and balance problems. He would often attempt to transfer from his wheelchair to bed on his own, and had already fallen twice. When he forgot information, he often confabulated or filled in his memory gaps with inaccurate information. For example, he believed that his physical therapist had cleared him to do transfers on his own, even though she had clearly informed him that he should have assistance. RH also insisted that he would be able to return to living independently following discharge, in spite of the team’s recommendation that he should be supervised. He had never argued with his parents before injury, but was frequently doing so now, mainly over how independent he should be in activities.Related posts:
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