According to the Centers for Disease Control and Prevention, a traumatic brain injury (TBI) occurs when an impact to the head results in disruption of brain functioning. While post-TBI physical impairments can hinder functional independence, the behavioral, cognitive, emotional, psychosocial, and personality changes associated with TBI frequently lead to even greater problems. Comprehensive evaluation and treatment are the foundation to optimizing outcome after TBI, as the complex functions affected, in interaction with the cultural, social, and personality backgrounds of each individual, demonstrate the need for unique approaches to intervention.
Traumatic brain injuries are categorized along a continuum of severity: severe, moderate, and mild injury—with the majority of injuries falling into the mild range. Although there are multiple factors and different grading systems used to classify these injuries, most use similar criteria. Many times, individuals with more severe injuries have more severe deficits, more residual long-term impairments, and a longer recovery course. Those with milder TBIs may have subtle problems that are never properly diagnosed. These categorizations are usually made early on in the course of injury and do not always correlate with the speed or extent of recovery from a TBI.
The continuum of rehabilitation for persons with traumatic brain injury is broadly segmented into three stages that follow the initial acute medical intervention. These three stages are: Inpatient, Community Integration, and Lifetime of Care. Although they reflect a general progression in rehabilitation, a person with traumatic brain injury does not necessarily proceed through these stages in exact order. Each person’s rehabilitation process is unique to his or her circumstances.
Typically, individuals identified as having experienced a TBI are seen in an emergency department and, along with a clinical exam, may undergo immediate neuro-radiological examination such as head computerized tomographic (CT) scan or magnetic resonance imaging (MRI), to assess signs of brain trauma (bleeding within the skull or brain known as intracranial hemorrhaging, increased pressure on the brain, or bruising of the brain known as contusions). Individuals with identified brain pathology are typically admitted to the hospital intensive care unit for close observation and needed medical interventions. If the pressure on the brain becomes severe enough, surgical intervention to relieve this pressure becomes necessary. In less severe cases, the patient may be treated with medications to prevent medical complications associated with brain trauma and monitored.
There can also be lack of conclusive physical evidence of the injury on standard imaging such as CT and MRI scans, especially in mild TBI, since microscopic damage after TBI is often not visible on standard neuroradiological assessment tools. In mild TBI, physical symptoms may also resolve quickly or never develop despite cognitive and behavioral problems existing, thus the need for comprehensive evaluation including clinical history, neurologic and mental status exam, and neuropsychological testing. However, these assessment tools are rarely utilized in the emergency or acute care setting, and the person with mild TBI is often not diagnosed and sent home. Even in the scenario of severe TBI, the life threatening medical issues (such as the hemorrhaging or increased pressure on the brain mentioned above) and/or trauma to other areas of the body, may minimize or obscure diagnosis and treatment of non-physical aspects of TBI. Although efforts are being made to inform physicians and the public of the spectrum of TBI symptoms, more awareness is still needed since it is impossible to appropriately treat TBI if the TBI is not recognized.
Inpatient rehabilitation generally begins following the medical stabilization of the injury at which time the rehabilitation team assesses the individual’s condition, designs and implements rehabilitation interventions and develops a discharge plan. Inpatient rehabilitation is provided while the individual remains in a hospital or other healthcare facility.
For individuals with identified TBI (usually more moderate or severe), a period of acute care stabilization occurs within the hospital. Confusion and fatigue are common, and a broad array of specialists may participate in the evaluation and treatment process. Individuals who continue to have significant complex health needs or are in a coma, may transition to long term acute care hospitals (LTACs). LTACs specialize in medically complex care, such as ventilator weaning and wound care. More often, those with TBI are referred to inpatient or outpatient rehabilitation services depending on the nature and extent of services needed.
Rehabilitation settings are typically characterized by a treatment team approach to meet the complex needs of the person recovering from TBI. The team is usually directed by both a physician specializing in rehabilitation medicine, and a case manager or care coordinator who ensures communication with family members, funders and across the various treatment providers. The rehabilitation team approach allows for focused services delivered by specially trained professionals with knowledge of interventions for TBI related issues. Further, this approach facilitates communication among team members and allows for rapid sharing of goals for treatment that are tailored to each person’s unique rehabilitation needs. Most importantly, the person with TBI and their circle of support is the hub of the team. Although every rehabilitation setting has its own specific structure and team organization, the roles of some of the more common team members in both inpatient and outpatient settings are outlined below.
TBI rehabilitation physicians (physiatrists) specialize in rehabilitation medicine and are responsible for the overall coordination of care both in the inpatient and outpatient settings. They may provide life long medical and medication management and may work with other physician specialists. Neuropsychologists address TBI effects on thinking processes, behavior and emotions. The neuropsychologist conducts detailed assessments and delivers behavioral and cognitive interventions to maximize awareness, adjustment to injury, cognition and overall functioning. Rehabilitation nurses address medical needs as well as safety, self-care, medication administration, proper nutrition, dressing, bowel and bladder functions, and mobility. This is usually done in inpatient settings but visiting nurses can offer services to those at home. Physical therapists evaluate and intervene to enhance mobility, balance, strength, flexibility, coordination, safety and endurance, within a variety of tasks across environments. Occupational therapists evaluate and intervene to decrease difficulties identified in the performance of basic activities of daily living such as feeding, dressing, bathing, and personal grooming. Occupational therapists may also address sensory, perceptual, and cognitive deficits that can interfere with the completion of higher-level activities of daily living such as preparing meals, completing household chores, managing childcare responsibilities, and handling finances. Speech therapists evaluate communication and cognitive abilities after TBI. Many speech therapists also evaluate swallowing functions and provide treatment to improve swallow safety as needed. Recreational, art, and music therapists utilize diverse means to enhance activity, quality of life and therapeutic outcomes, and identify areas of leisure and social interest that enhance independence. Therapeutic activities are selected to address cognitive and behavioral challenges and improve social functioning. Vocational counselors assist with transition back into the workforce or school, as well as to assess for adaptive equipment and workplace modifications to facilitate employment. Social workers/care coordinators/case managers are the communication nexus of the team and may come from social work or nursing backgrounds. They offer supportive counseling to patients and families, address financial and insurance issues, assist with plans regarding post-hospital care and serve as liaisons among the rehabilitation program, insurance carriers, disability offices, and other community resources.
The person with TBI and their family (defined as those comprising the inner circle of support for that person) are key members of the rehabilitation team as well. Family members provide direct care and emotional support, as well as insight into the unique social history and behavior of the individual with TBI. When the family is invested in the rehabilitation program, the effectiveness of a treatment program can improve greatly. Although it is not always possible to engage the person with TBI actively, especially early in the course of recovery, appropriate family support can reduce stress and anxiety, as well as promote participation in the rehabilitation program. However, it is important to note that unhealthy family interactions can also hinder recovery.
The overall principle of rehabilitation is for individuals with TBI to incorporate compensation strategies into their lives at the same time as they are trying to improve and recover their functions. The team approach, where the treatment team members meet directly and frequently with each other to discuss the care plan, facilitates communication among team members and allows for rapid sharing of specific goals for treatment that are tailored to each person’s unique rehabilitation needs. The needs of the person with TBI and the point along the rehabilitation continuum influence the combination, setting and types of services offered. Ideally, goals are person-centered, reflecting the unique needs, challenges and priorities of the person served. Particularly in post-acute settings, such as community integrated rehabilitation programs, many team members may be working together in a coordinated manner to achieve particular goals. Consistency and structure are often necessary to effectively address cognitive and behavioral issues, thus the need for a well functioning team is paramount in the TBI rehabilitation setting.
In order to be eligible for acute inpatient rehabilitation (which implies close physician supervision, management by experts in rehabilitation, and active therapies) as opposed to subacute inpatient rehabilitation (implies less intensive inpatient rehabilitation and medical care/supervision), medical insurance companies generally require that the individual with TBI must be able to engage in and benefit from three hours of physical and occupational therapy daily versus less daily therapy at subacute rehabilitation centers. In addition, most insurers require the person with TBI to have residual physical impairments that would benefit from continued physical rehabilitation. These conditions have reduced the ability of those who need it to access acute inpatient rehabilitation, as well as diminishing the length of stay to a few weeks. However, many times, acute inpatient TBI rehabilitation facilities are the most suitable place for patients to transition from the acute care setting to later stages of rehabilitation care, especially if they still have significant medical issues, post TBI agitation or behavioral problems, substantial cognitive and physical rehabilitation needs with good potential for recovery, or arousal issues that would benefit from intensive stimulation and monitoring. Unfortunately, many insurers and public funding streams may not cover these components of the later stages of rehabilitation.
When individuals with TBI do not need or meet the requirements for acute inpatient rehabilitation or are not able to participate in acute inpatient rehabilitation for financial reasons, but still have needs requiring 24-hour skilled nursing and rehabilitation care, subacute inpatient rehabilitation is an option. This is also a viable option for those who are making progress toward recovery but still have significant deficits requiring inpatient care at a less intense level. As opposed to a typical nursing home, subacute inpatient rehabilitation settings offer a rehabilitation program along with medical care, and the expectation is for the person with TBI to make functional gains toward a safe discharge. These facilities tend to have less physician and nursing coverage per patient and offer less hours and intensity of rehabilitation therapy than acute inpatient rehabilitation facilities, while having longer lengths of stay. As there are TBI acute inpatient rehabilitation programs, there are also TBI specific subacute inpatient rehabilitation programs which are have greater expertise in addressing medical, cognitive, psychosocial, and behavioral issues associated with TBI.
Once a person with TBI is medically stable and has progressed toa level where they are safe in the community (either able to live independently and safely in the community or has an adequate support network to provide the assistance needed at that time to return to the community safely), they are ready for discharge from inpatient rehabilitation care. Options for community integration services may include: independent living, group home, personal assistant services, vocational rehabilitation, etc. Careful education about discharge plans and needed follow-up appointments are important for the person with TBI and their family.
Many individuals who sustain TBI return to productive work, social roles, family responsibilities and their pre-morbid lifestyle. However, some TBI survivors live with residual disability, have unmet care needs, and/or are initially unsuccessful in community re-entry. Those individuals with TBI at risk for unsatisfactory outcomes or with continued rehabilitation needs are candidates for community-integrated rehabilitation.
Lifetime of Care: Community Integrated Rehabilitation
Community integrated rehabilitation (CIR) is a broad term encompassing various approaches and contexts for treatment, with a gradually evolving body of supporting scientific evidence.
CIR is also referred to as post-acute brain injury rehabilitation and generally includes a number of approaches that allow for individuals with TBI to benefit from further rehabilitation after medical stability is established and initial acute (in-hospital) rehabilitation is completed. Specific models of CIR include neurobehavioral programs, residential programs, comprehensive holistic (day treatment) programs and more recently, home-based programs. Neurobehavioral CIR programs have historically focused on treatment of mood, behavior and executive function, while ensuring supervision and safety in a residential, non-hospital setting. Such programs focus on psychosocial outcomes with emphasis on application of behavioral principles and development of functional skills. Neurobehavioral CIR programs typically have treatment teams, utilize direct support personnel as therapeutic extenders, and are often led by neuropsychologists or behavior analysts. Residential CIR programs were initially developed for individuals who required extended comprehensive TBI rehabilitation, but needed 24-hour supervision or did not have access to adequate outpatient/day services. The home-like environment and staff support served to facilitate development of skills needed to negotiate everyday life, easing generalization across community environments. Comprehensive holistic day treatment CIR programs provide a milieu-oriented, multimodal approach with a neuropsychological focus. Interventions target awareness, cognitive functions, social skills and vocational preparation through individual, group and family-involved interventions delivered by a treatment team. Home-based CIR involves a highly variable degree of services and supports for the individual with TBI able to reside in a home environment. Typically, such individuals do not require 24-hour supports or supervision. Home-based CIR may include the spectrum of outpatient services commonly accessed through individual treatment providers or clinics, or minimal professional supports. There is usually no identified ‘treatment team’, although collaboration across a number of health and social service systems may be evident. Behavioral approaches using self-monitoring and cueing are employed, as well as models wherein family members or in-home paraprofessionals are engaged as therapeutic change agents. Additionally, Home-based CIR involves participant education and the growing use of adaptive equipment, telephonic or web-based support, and technological devices. These devices will be the topic of a future article.
There are also instances where individuals experience a TBI but do not require inpatient rehabilitation or even an inpatient acute care stay. Most of these individuals are considered to have had a mild TBI and are good candidates for CIR. Mild TBI has been called the “invisible injury” since the majority of individuals present without noticeable physical deficits or obvious cognitive and behavioral issues at first glance. However, upon closer examination, they may have difficulty across cognitive, behavioral, and emotional domains of functioning. Balance deficits and symptoms such as loss of the sense of smell, headaches, nausea, and dizziness may also be seen. Fatigue, mood change and trouble concentrating are common. Often these individuals are able to function independently in the community with minimal support from family or friends, but struggle to resume their former roles as related to work and relationships. Sometimes, cognitive and physical symptoms only emerge after the person with a mild TBI has attempted to return to these former life activities and roles. In many cases, it takes rejection or failure with these former relationships and roles for the person to seek treatment. However, due to the subtlety of their deficits and problems, those with mild TBI may never seek help, struggle to find the right type of help and/or not be able to secure insurance or other funding to cover their specific rehabilitation needs.
There are a substantial number of persons with TBI who have long lasting and even life long difficulties related to their TBI, whether they are cognitive, behavioral, psychosocial, or physical. These individuals may continue using many of the services discussed earlier. Case managers and social workers as well as disability organizations can help obtain further appropriate services such as transportation, financial, and housing assistance. Many states have TBI specific Medicaid waivers and assistance programs to help facilitate provision of appropriate services. In addition, support groups and recreational/community organizations for persons with TBI as well as their families can fill extremely beneficial social and advisory roles. Other non-specific sources of aide such as through local church and community programs can provide valuable assistance including volunteer or financial help.
The structure, level of intensity, and services available for both inpatient and outpatient TBI rehabilitation programs vary widely from one area to another, whether comparing facilities, cities, states, or countries. Unfortunately, socioeconomic and medical insurance status also can limit the types of services available to a particular person. There is no single proven method or course of TBI rehabilitation that works for every person, thus it can be difficult for patients, professionals and families to determine the best course of action in certain circumstances. For instance, individuals with mild TBI may not require inpatient acute medical or rehabilitation services at all and address their TBI management completely at the outpatient level, whereas others who make rapid medical recovery or have great family support after their TBI may transition straight from acute inpatient medical care to outpatient TBI rehabilitation programs, skipping inpatient rehabilitation. Furthermore, considering the various physical, cognitive, behavioral, and psychosocial issues that can develop after a TBI, each person benefits most from a rehabilitation program tailored to their individual needs.
Lifetime of Care: Long-term Care
Unfortunately, some individuals with TBI are medically stable but no longer making significant progress functionally after an extended period of time and do not meet requirements for ongoing inpatient rehabilitation even though they remain at a low level of function overall. Although many families are able to address significant functional needs at home, the burden of care can be overwhelming both in terms of time and money. As a result, some of these individuals with extended needs post-TBI require long term care in a skilled nursing setting where they will continue to receive nursing and medical care (usually with less intensive medical supervision) but no longer continue on an active rehabilitation program. The burden on the caregivers for those persons with significant long-term needs who return home should not be underestimated as it can be a 24 hour per day occupation physically, mentally, and emotionally. For this reason, some individuals with TBI ultimately require long-term placement or services even after initially returning home with family support.
Other persons with TBI may require long term supports in the context of living in the community. Levels of support may range from 24-hour supervision to a few hours per week to assist with a challenging activity such as shopping, checking a pill planner or banking. Again, supporting the unique needs of the individual with TBI is the key to optimizing quality of life and success.
Also contributing to this article: Tina M. Trudel, PhD, Marcia J. Scherer, PhD, MPH, FACRM, and Raphael Gaeta, MSW
About the authors: This series is being published by the Traumatic Brain Injury—Resource Optimization Center (TBI-ROC) and its Advisory Group, which is facilitated by JBS International, Inc. The TBI-ROC aims to be a recognized source and leader for advancing national attention to the myriad of policy, research, practice, and service needs supporting both civilian and military individuals who incur TBI and their families.
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