Comparing brain injury rehabilitation practices: what can North and South Americans learn from each other? (Comparing Brain Injury Rehabilitation Practices).

Professionals from the United States and Uruguay are mutually concerned about brain injury residuals. Estimates of acquired brain injuries emphasize the need for the development and provision of comprehensive services to best serve these persons.

United States. In 1986, the National Head Injury Foundation described head trauma as a "silent epidemic," and traumatic brain injury (TBI) continues to be the leading cause of death and disability in the U.S. for persons up to age 44 (National Head Injury Foundation, 1986). In 1987, Krause estimated that 500,000 persons in the U.S. sustain TBI annually, with 30% to 40% of these injuries reported to be moderate or severe (Frankowski, Annegers, & Whitman, 1985). By 1998, the National Institutes of Health Consensus Statement indicated that this number had increased dramatically, with 1.5 to 2 million persons per year incurring TBI and 70,000 to 90,000 of these individuals experiencing long-term loss of functioning. In addition, the number of persons in the U.S. surviving severe TBI with impairment has risen steadily, incurring significant economic and social consequences.

Uruguay. No data on the incidence of TBI in Uruguay are available. However, global figures on number of vehicle accidents may provide an estimate. The National Prevention and Control Commission (Garat, 2000) indicates the annual number of road accidents in Uruguay to be 70,000 including 600 fatalities and 18,000 injuries. Fifty percent of fatalities and injuries involve persons who have an average age of 25. Nearly 8,000 of those injured have sustained serious injuries and over half of these persons have sustained brain injuries (Fontan, 2001).

Vehicle accidents cost the Uruguayan society in excess of 927 million US dollars a year including decreases in productivity (injured, impaired, or killed workers), health care costs linked to acute and post-acute medical/long-term services, physical damages, and long term care needs for persons with permanent disabilities. Health care services are a priority and Uruguayans spend approximately 696 million and 1.591 (about 1.6 billion) US dollars from the public and private sectors, respectively.

Common TBI Residuals

The rising incidence of brain injury has directed professionals worldwide to identify residual consequences and rehabilitation needs of this population. Although brain injury residuals vary, depending upon the severity and location of the injury, three post-TBI changes have been identified in the literature. These three system changes are: physical (Kay & Lezak, 1990; Vogenthaler, 1987), emotional (Deaton, 1986; Lezak, 1989; Prigitano, 1992; Vogenthaler, 1987), and cognitive (Kay and Lezak, 1990; Lezak 1989; Greif & Matarazzo, 1982; Prigitano, 1992; Vogenthaler, 1987).

Physical changes may include sensory deficits (e.g., visual or heating impairment), diminished coordination and muscle control, fatigue, seizure disorders, and headaches. The physical changes are generally the most easily recognized by others. In addition, typical emotional changes include emotional lability, decreased inhibition, increased anger, depression, frustration, and anxiety. These post-TBI alterations become most apparent to family members or co-workers. Cognitive changes post-TBI may create additional rehabilitation needs and include decreased short-term memory, inability to maintain attention/concentration, difficulty with receptive and/or expressive communication, and poor organization/planning. These changes once again are most noticeable to those who have close contact with persons who have TBI (Kay & Lezak, 1990; Prigitano, 1992; Vogenthaler, 1987).

Kay & Lezak (1990) described cognitive changes with greater specificity by discussing the pervasive limitations that impaired executive functioning may present. Diminished executive functioning is connected to frontal lobe damage, and simply put, is "an organically based inability to plan, put into action, and carry through with an appropriate course of action" (p. 37). An unemployed person manifesting executive dysfunction may claim he/she wants to go to work, but has no idea how to initiate, plan, or complete a job search. Additional behaviors related to executive dysfunction include difficulty sequencing events, loss of self-monitoring ability, and inability to analyze social situations and self adjust. When a person demonstrates such behaviors, he/she may have difficulty interacting with others and may be identified as cognitively impaired, unmotivated, and disinterested. Such residuals from diminished executive functioning create pervasive social and vocational problems. Once professionals have identified common residuals, brain injury professionals can design services to meet these specialized needs. The following studies have examined post-TBI employment.

Return to work studies have documented that post-TBI employment success varies greatly. Roessler, Schriner, and Price (1992) reported that 70% of 1,052 total respondents (voluntary brain injury survivors located from mailing lists of 10 state chapters of the National Head Injury Foundation) were unemployed at one (1) year post-TBI, and only 14% of those working were employed full-time. Although Fraser, Dikmen, McLean, Miller, and Temkin (1988) reported that 73% of persons with TBI who worked pre-injury also were working at one year post-injury, 40% of this sample experienced employment problems related to their injury. Such bleak post-TBI employment figures may be related to impaired "adaptive behavior," including impaired social (communication) skills as reported by 49% of the sample. The neurobehavioral literature (Bayless, Varney, & Roberts, 1989; Cicerone & De Luca, 1990) also provides support for the hypothesis linking post-traumatic executive dysfunction and vocational failure. In sum, residuals impacts one's cognitive abilities, emotional stability, social abilities, vocational opportunities all culminate into psychosocial barriers that impede community reintegration of per sons with brain injury. Brain injury residuals are prevalent worldwide and must be addressed to rehabilitate these persons. Following are descriptions of how two countries professionally serve persons with brain injuries.

Rehabilitation Protocols

United States

Typical TBI rehabilitation phases include acute medical services, acute rehabilitation services, and post-acute rehabilitation services (Vogenthaler, 1987). These phases target preserving life, increasing post-TBI physical and daily functioning, and facilitating successful community reintegration, respectively. The ideal goal has been to provide necessary comprehensive rehabilitation services to assist with the successful reintegration of each person with TBI into all areas of life. The increasing numbers of persons surviving TBI have stimulated rehabilitation professionals in the U.S. (neuropsychologists, psychologists, and rehabilitation counselors) to more closely examine this population and deliver more comprehensive rehabilitation services. Physical, cognitive and emotional deficits serve as obstacles to community integration and vocational success for adults with brain injury (Roessler et al, 1992; Fraser et al, 1988; Upton & Bordieri, 2001). Public and private rehabilitation systems in the United States operate based on economic and moral principles (Rubin & Roessler, 2001).

More specifically, initial investments in providing rehabilitation services have been shown to provide economic benefits (e.g., paid taxes, decreased reliance on public aid) and public opinion supports the provision of these services "because it is the right thing to do." Health care/rehabilitation systems in the United States consist of a mixture of public and private services. Universally, one post acute rehabilitation system, the state/federal Vocational Rehabilitation (VR) system, is available for persons with TBI throughout the United States. However, the degree of medical, acute rehabilitation, and other post acute rehabilitation services that people receive depend upon one's financial and insurance resources. A conceptual case will be described to emphasize how such persons are likely to be served through the US brain injury rehabilitation systems.

Typical United States brain injury case. Immediately preceding the three phases, acute medical services, acute rehabilitation services, and post acute rehabilitation services; of brain injury rehabilitation in the US and their goals were mentioned. Consider the service progression of a 19 year old man who sustained multiple injuries, including a severe TBI as receiving typical rehabilitation services provided in the US continuum of brain injury services. Initially, this man would be taken to a trauma center so he could receive emergency medical services to preserve life and monitor vital signs while in a coma. Medical professionals, physicians, neurologists, and nurses provide medical services at this time. After emerging from coma and vital signs are stable, transfer to an acute rehabilitation facility is appropriate. Here an interdisciplinary team whose members include: a physiatrist, physical therapists, occupational therapists, speech language therapists, vocational rehabilitation counselors, social workers, psychologists, psychiatrist, and nurses collaborate to provide comprehensive services to facilitate this person to eliminate (at least negate) brain injury residuals. Residuals such as decreased ambulation, coordination, self-care, memory, language abilities, and depression are commonly targeted during acute rehabilitation. The combined efforts of therapists target enhancing physical strength and coordination, self-care abilities, memory and language skills, and mental status before discharge is recommended. Once ambulation and consistent self-care is demonstrated, the person is many times discharged from the inpatient setting.

Lastly, post acute rehabilitation services may be appropriate and may be provided in many ways. The person may be afforded to continue with multidisciplinary rehabilitation services on an outpatient basis. This is desirable when the person is medically stable, is making progress, and the team collectively agrees more progress can be made. Also, referral to the state/federal VR system to facilitate successful return to work or independent living services may be appropriate. Perhaps referral to innovative community based rehabilitation programs designed to facilitate community reintegration of persons with brain injury (Upton & Bordieri, 2001) are possibilities. It should be emphasized that emergency medical treatment and the state/federal VR system are accessible to most persons in the United States. The bulk of acute and post acute brain injury rehabilitation services are available on a limited basis, depending on one's financial resources. Services are provided to achieve an overriding goal of functional independence. More specifically, comprehensive service provision is directed toward productive employment and independent living outcomes.

Uruguay

Uruguay is a small country, situated between Argentina and Brazil and it extends over 182,000 sq. km. The population is 3,421,321, the average life expectancy is approximately 74.5 years and per capita income is $5,200 US dollars (INA, 2000). The Constitution provides the right to health (services) and forces the state to look after the needs of the most deprived sectors of the population. The delivery of free health services is done through the Ministry of Public Health and its medical care net. Please note these services are for routine health care concerns.

The rest of the population (approximately one million people) are covered through a semi-private system of pre-paid full coverage known as instituciones de asistencia medica colectiva. This prepaid coverage is when persons pay a set fee and these fees collectively serve as the financial base to pay for required health care services. Insurance coverage is almost nonexistent, although there has been an increase in the insurance recently. Both systems favor the tertiary medical care (remediating symptoms of disease), with lesser emphases on primary or preventive medicine. No provisions are made for rehabilitation (vocational rehabilitation, cognitive rehabilitation, living skills training). However, payment for physical and speech therapies are provided.

Uruguayan Protocol

As for TBI, both systems cover intensive care services through Centers of Intensive Multipurpose Treatment. These are multidisciplinary facilities that treat persons with all disabilities and none are specialized for TBI rehabilitation. Professionals working at this setting include Intensive Care Unit nurses and specialized doctors. The goals of these facilities are to prevent human death, stabilize human functions, and discharge as soon as possible. This discharge will be either to one's home or a generic (all disabilities) intermediate care unit. These intermediate care units provided general custodial care to patients without any structured therapies. When finally discharged to home, future treatment is the responsibility of the family doctor, neurologist, or psychiatrist.]

Rehabilitation efforts for people with TBI during acute care and subacute care are limited to one or two limited private clinics and a few research studies. More specifically, residents need to have substantial financial resources or be willing to participate in experimental cognitive rehabilitation treatments to receive needed rehabilitation services. The scarcity of services is upsetting and there is a strong consensus among academicians and professionals that expanding and increasing accessibility of needed brain injury services is imperative. Basic objectives in the Uruguayan protocol are to preserve life, stabilize functioning, and transfer responsibility of patient's care to the family unit as expeditiously as possible. A strong cultural value emphasizing interdependence among the extended family is a primary means to assist community reintegration of persons following brain injury.

Typical Uruguayan brain injury case. As a representative case of Uruguayan brain injury, consider the following 15 year old male adolescent who sustained a severe TBI. After emergency medical services and discharge home, rehabilitation efforts were provided by an interdisciplinary team comprised of two rehabilitation specialists, a psychiatrist and a neurologist (who served as the team leader). Please note these services were provided by private neurological professionals. Following are specifics regarding this person's rehabilitation.

The individual had 10 years of formal education and had some mathematical and behavioral difficulties at school. These concerns may have been related to his history of childhood hyperactivity. Upon entry to the acute medical care center his level of consciousness was quantified with a Glasgow Coma Scale score of 3 (severe injury) and he was in coma for a month. Neuroimaging confirmed brain damage (contusions in the bilateral temporofrontal, parietal, and occipitoparietal areas) was extensive.

Six months after the brain injury, this person began rehabilitation from the collective efforts of the aforementioned team. At this point several physical deficits including bilateral spasticity, neurologically linked pain in right lower extremity, impulsive and aggressive behaviors, uncooperative to nursing care, no neurological control of toileting, and received nourishment by a gastromy tube.

Psychologically, this person manifested delirium, severe amnesia, and difficulties with (episodic) memory. Furthermore, his ability to learn new material was negatively impacted due to impaired attentional and visuospatial abilities. In contrast, speech production and reading skills were adequate. In efforts to ameliorate physical and psychological residuals, this man was taking a muscle relaxer, an anticonvulsant, migraine prevention medicine, anti-psychotic and anti-depressant medications. These pharmacological interventions were one strategy used for this person and he required twenty four hour care.

The interdisciplinary team formed a cognitive-emotional plan with objectives that addressed his various life,needs. Initially, 24 hour nursing care was provided to assure his physical and medical safety. Also, cognitive rehabilitation services were provided to elevate his attentional, memory, orientation, and visuo spatial abilities. Emotionally, counseling was provided to this man to faciltitate adjustment and alleviate fears associated with his current situation. These objectives were directed at the individual associated which necesitate personal change. Lastly, integration of the family, a strong cultural norm was intertwined within this plan.

More specifically, when working with persons with TBI it is important to integrate the family within the treatment. Sometimes strong families can provide a solid infrastructure to support and facilitate recovery of the person with TBI. This family initially was of minimal help as it manifested shock, disbelief, and were devastated by this event. Consequently, the family appeared to be of little help to this adolescent's recovery. However, the interdisciplinary team educated the family on brain injury, described how daily functioning may be impaired, and learned how to implement simple strategies to enhance his time management skills, memory, spatial orientation, and social interactions. Essentially, family interactions with this adolscent complemented the outpatient cognitve therapy.

Rehabilitation gains. Chronological rehabilitation milestones important to the person's overall recovery are noted. Initially, three weeks after rehabilitation began, the gastrostomy was removed and was physically able to toilet himself. Also, this was the beginning of regaining weight he lost during his comatose state. One week later (one month after rehabilitation started), he gained and reported slight cognitive awareness of his current situation, diminished his aggressiveness, and expressed his needs verbally. This cognitive awareness was the beginning of ongoing improvements. Six weeks into rehabilitation this person is able to successfully participate in a family outing further encouraging the family to stay involved with his rehabilitation. However, at this time he was still under 24 hour supervision. Two more weeks (two months into rehabilitation) pass and his daily supervision was reduced to 16 hours (no supervision while sleeping). Furthermore, three months into his rehabilitation he only requires eight (8) hours. During these times he is making small gains in his memory, daily routines, and social interactions from a combination of his therapeutic meetings (averaging three days a week) and family assistance. The therapeutic meetings focus on cognitive rehabilitation strategy to enhance his attention, memory, language skills, and personal awareness.

Fourth months into his rehabilitation and changes are still occuring. His uneven gait is improving, he can walk more easily, and he is removed from all of his mediations with the exception of one anti-convulsant drug. Continued progress from the complementary professional and family involvement is observed. During the fifth month, the professionals work on preparing this person and his family for termination. Preparation for termination was completed and rehabilitaion interventions for this adolescent ended after six months. Many gains were made including the eradication of behavioral problems, but slight amnesia, impaired executive functioning, and limitations with independent completion of Activities of Daily Living (ADLs). At termination, this person was referred to a protected education facility where he continued working on his social skills and and independence.

Similarities and Differences Between Rehabilitation Protocols

Two similarities between these protocols were noted. It is clear that both protocols emphasize that emergency medical services are needed immediately following acquisition of brain injuries. Preservation of life is of primary importance to professionals in both countries. Comprehensive medical services primarily provided by doctors and nurses at emergency treatment centers are available following brain injuries. In addition, health care professionals in both countries understand the post injury interdisciplinary rehabilitation interventions are needed to facilitate community reintegration following brain injury. It is evident that more rehabilitation professionals are involved in the United States' brain injury protocol. Uruguayans generally only have the involvement of a family doctor, neurologist, and psychiatrist. Furthermore, access to brain injury rehabilitation services is directly tied to one's personal resources. Review of these protocols emphasized that personal/family resources are directly linked to increasing availability and duration of services.

Differences in the protocols reviewed were also noted. Initially, one may realize the scope, depth, and comprehensive nature of brain injury services are more fully developed in the United States. The existence of these services may be linked to financial success and strong government commitment to serving persons with "more severe" disabilities. Also, persons living in the United States have greater opportunities to access brain injury rehabilitation services for at least two reasons. First, most persons have some access to post injury rehabilitation services through third-party insurance coverage that is many times provided to families from full-time employment. Also, those without insurance may seek comprehensive vocational services through regional state/federal Vocational Rehabilitation (VR) offices. Nationwide, United States' residents with brain injuries may apply for comprehensive VR services without meeting any financial requirements.

Furthermore, different languages are used that diminishes the ease of service replication. Thoughtful replication across cultures demands that a language translation, as well as critical review to assure the service protocol is culturally appropriate. Lastly, cultural values of independence versus interdependence emphasize a difference that impacts overreaching goal of brain injury rehabilitation. In the United States, comprehensive services are provided so persons can achieve the most independence possible, which is a predominant societal value. Alternately, services provided to Uruguayans are intended to enhance independence so one can best function in a culture where interdependence is more desirable that independence. An emphasis on shared functionality following brain injury is desired.

What Can North and South Americans Learn From Each Other?

This manuscript emphasized converging themes, divergent themes, as well as a shared vision regarding the rehabilitation of persons with TBI. First and foremost, TBI is a worldwide epidemic and all people with TBI should have access to rehabilitation services because there is always some degree of improvement. In addition, holistic rehabilitation should be provided by an interdisciplinary team, encompassing all impaired life areas of the person with TBI. Both protocols suggested holistic rehabilitation requires professsional and family collaboration to achieve community reintegration. However, the Uruguayan scope of services was largely limited to medical and cognitive rehabilitation services. Limited resources constrict the scope and extent of services offered regularly to persons in Uruguay with brain injury. Also, professionals from both protocols concurred that providing rehabilitation immediately (not waiting a year or so) following a brain injury that is "tailored" to individual needs is advised. Professional experiece has demonstrated specific needs for persons with brain injury are most effectively dealt with on an individual basis.

Furthermore, protocol differences were evident. Broader availability of services in the United States affords two unique opportunities. First, systematic quantification of service effectiveness may enhance service provision. Dissection of service delivery systems into measurable pieces forces one to examine how each component impacts the rehabilitation consumer. Second, cross-cultural replication opportunities may be increased once service effectiveness has been established. Translation of service protocols into Spanish may increase the availability of appropriate brain injury services available in Uruguay, as well as for Latinos being served in the United States.

Also, the relative timeline for the provision of cognitive rehabilition varies. Uruguayan professionals provide cognitive rehabilitation at the beginnings of the rehabilitation process, wheres US professionals generally provide this in the later part of the acute or post acute rehabilitation phases. One may wonder if the timing of the provision of cognitive rehabilitation is related to outcomes following brain injury.

Lastly, it was quite apparent that the evolution of comprehensive brain injury services has begun worldwide and it is evident this in an ongoing process. It seems apparent that cross-cultural collaborations may be beneficial to all parties. More specifically, we intend to continue our cross-cultural collaborative research efforts to further improve brain injury rehabilitation services, thereby enhancing the overall quality of life for persons with TBI whom we serve.

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Thomas D. Upton, Ph.D., CRC, Rehabilitation Institute, Southern Illinois University, Carbondale, IL 62901-4609. Email: [e-mail]

Thomas D. Upton
Southern Illinois University of Carbondale

Luis Fontan
Paola Premuda
Jorge Lorenzo
Nila Quinteros

Universidad de la Republica, Montevideo, Uruguay