Milieu-Based Neurorehabilitation at the Adult Day Hospital for Neurological Rehabilitation†
Pamela S. Klonoff, PhD
David G. Lamb, PhD
Steven W. Henderson, PhD
Marie V. Reichert, CTRS/CRT
Susan L. Tully, OTL/R
Division of Neurology, Barrow Neurological Institute, St. Joseph’s Hospital and Medical Center, Phoenix, Arizona
†Adapted from Klonoff PS, Lamb DG, Henderson SW, Reichert MV, and Tully SL: Milieu-based neurorehabilitation at the Adult Day Hospital for Neurological Rehabilitation, in Christensen AL and Uzzell B (eds): International Handbook of Neuropsychological Rehabilitation. New York: Kluwer Academic/Plenum Publishers, 2000. With permission from Kluwer Academic/Plenum Publishers.
The Adult Day Hospital for Neurological Rehabilitation (ADHNR), a milieu-based outpatient neurorehabilitation program for persons with acquired brain injury, has been in operation since January 1986. This article summarizes the philosophy of the programs and describes the primary group therapies, detailing the evolution of the program since its inception. Pertinent clinical research on outcomes is considered briefly.
Key Words: brain injury, milieu, neurorehabilitation, outcomes
Since January 1986 the Adult Day Hospital for Neurological Rehabilitation (ADHNR) has provided a milieu-based rehabilitation program for persons with acquired brain injury. Much of the program’s conceptual framework was derived from the work of Luria[12,13] and Ben-Yishay and colleagues.[2,3] Luria’s theory of restoration of higher brain functions has been applied to both diagnostic and cognitive remediation techniques. Ben-Yishay developed the holistic approach to neurorehabilitation, incorporating cognitive remediation into a therapeutic community. According to his theory, patients progress through a hierarchy of six stages: engagement, awareness, mastery, control, acceptance, and identity. When the latter is attained, patients should have become reintegrated into the community and achieved their highest level of productivity.
Program Philosophy and Description
The ADHNR program actively emphasizes developing a positive working alliance with patients and families and helping patients improve their levels of awareness, acceptance, and realism about the effects of their injury. Awareness has been defined as the patients’ level of understanding of their areas of strength and difficulty. As part of the process of improving awareness, patients often experience a strong emotional reaction (e.g., anger, frustration) when they perceive that their brain injury has caused them to fail at performing a task. Patients are helped to understand the concept of such catastrophic reactions to recognize and manage their particular form of the catastrophic reaction. Many of the individual and group therapies that directly address cognitive, communication, and physical deficits are also designed to help patients improve their awareness of the effects of their injuries.
The second major facet of the rehabilitation process is to help patients accept the functional impact of their injury. Patients are given therapeutic suggestions to help them cope with and adapt to their injuries. Individual and group psychotherapy, family support, and education are important vehicles for increasing acceptance levels in both patients and families.
Finally, patients are helped to develop the skills necessary to make good decisions about their future. Such judgments are relevant to independent functioning in the home and community as well as to returning to work or school. Patients and families are taught the value of pursuing attainable goals, which, in turn, helps restore productivity and meaning in their lives. Pursuing an attainable goal often requires patients to modify their preinjury goals and aspirations substantially. Participation in structured work and school experiences as part of the rehabilitation process greatly assists patients in becoming realistic about the effects of their injury. Independent feedback from “real world” evaluators is valuable because it typically offers external validation of the observations and strategies provided in the rehabilitation process.
Since its inception, the structure and scope of the program have broadened substantially. The ADHNR program now incorporates two programs: Home Independence and Work/ School Re-Entry. The current treatment team consists of three neuropsychologists, two speech and language pathologists, two occupational therapists, one physical therapist, one recreational therapist, one neurorehabilitation aide, and one vocational counselor. The team regularly consults with the program medical director or referring neurologist to review patients’ progress and medical needs. A consultant psychiatrist is also available to help address patients’ emotional status. This interdisciplinary team places a strong emphasis on intercommunication and continuity of care, meeting four times a week for 1 hour (Monday through Thursday). Aside from providing treatment associated with their particular discipline, the staff members perform other roles, including conducting cognitive retraining, co-leading treatment groups, facilitating home and community independence, and establishing and monitoring work trials.
Home Independence Program
The Home Independence Program is designed to meet the needs of acutely brain injured patients, most of whom enter the program directly from an inpatient rehabilitation setting. These patients are actively reintegrating into their home environments and reestablishing meaningful roles within their families. When most patients begin the Home Independence Program, they require 24-hour supervision and some level of assistance with activities of daily living. The goals of the Home Independence Program are to help these patients to become progressively more independent at home and in the community and to function as productive members of their families.
Typically, patients in the Home Independence Program attend the program 5 days/week from 8:15 A.M. to 2:30 P.M. There are several admission criteria: (1) continence of bowel and bladder, (2) sufficient cognitive and personality skills to allow participation in six to seven therapy sessions each day (including small group interactions) within 4 to 6 weeks of entering the program, (3) no major psychiatric disturbance that would interfere with the patient’s ability to function in the program, (4) the capacity to progress to staying in the home unsupervised for a minimum of 4 hours/day, and (5) family members who are willing to attend weekly individual family meetings, the Relative’s Group, or both.
The occupational therapist takes the lead role within the treatment team to evaluate and address issues related to home independence. Upon admission into the Home Independence Program, patients are evaluated by the occupational therapist to determine their current and premorbid levels of functioning in activities of daily living. This evaluation includes interviews with patients. Available family members are also interviewed because the acuteness of cognitive deficits often causes patients to overestimate their current level of independence. The evaluation process includes a home evaluation, during which the occupational therapist observes patients in their home environment to determine the presence of barriers to mobility or performance. Recommendations for adaptive equipment or compensatory strategies can be made at this time and supplemented with continued training and education in future treatment sessions.
Next, the occupational therapist meets with both patient and family members to develop a Home Independence checklist, a list of tasks that the patient and family agree represent the patient’s premorbid level of functioning. The occupational therapist updates the checklist weekly, gradually increasing the expectations relative to independence in self-care and home management activities of daily living. Patients are encouraged to use their checklist actively (i.e., initiating, completing, and checking off tasks independently) and are required to turn the checklist in weekly to the occupational therapist, who calculates the percentage of completed items.
The checklist serves several purposes. In part, it represents an agreement among patients, family members, and therapy staff that the patient will strive to accomplish the tasks on the list and that the family members will support the effort. Patients must therefore have a key role in contributing to the development of all checklists to avoid feeling as though the checklist is merely a list of assigned “chores.” For some patients the checklist also serves as a memory aid, cuing them to the activities that they must complete daily or weekly. The occupational therapist regularly raises the issue of patients’ progress in Milieu (described below) by reporting the patients’ percentage of completed items to the community. Patients can then be recognized for their good effort, or problem issues that seem to be preventing adequate performance can be discussed and solved. Overall, patients’ progress in the Home Independence Program is assessed and updated monthly.
To complete the Home Independence Program, patients must demonstrate their ability to function independently for no less than 2 weeks, as defined by the consensus of patient, family members, and therapists. Typically, discharge criteria require that patients demonstrate adequate initiation, judgment, and safety awareness during regular periods of unsupervised time. The level of unsupervised activity in the home ranges from 4 to 24 hours.
Work/School Re-entry Program
The Work Re-Entry Program is designed to help patients become productive, whether through gainful employment or volunteer work. For some patients this goal means returning to their former job. For others, it may mean working in a job with less pay or status than their preinjury position. They may return to their former employer or, if necessary, work in a new environment. The vocational counselor helps patients find a permanent job by the time they are discharged from the program and conducts a vocational assessment to assist patients with career changes.
The School Re-Entry Program focuses on helping patients return to high school, community college, or a university. High school students often begin with homebound course work on the unit before returning to their school environment. On average, 12.5% of our program admissions in the past 5 years have participated in the School Re-Entry Program. Therapists actively work with school personnel to identify and address whatever special needs patients will have when they return to the classroom. This process includes dialogue and meetings with teachers (including input in developing Individual Education Plans), observing students in the classroom, and helping patients access resources on campus for students with special needs. Patients in the School Re-Entry Program eventually transition back to their school environment while they are still receiving program therapies. Usually, the speech and language pathologist, neuropsychologist, or both act as liaisons with the school.
The admission criteria for the Work/School Re-Entry Programs are similar to those of the Home Independence Program. Patients, however, also must be able to participate in some form of productive work or school activity within 4 to 8 weeks of admission to the program. Patients’ preinjury work status (e.g., basic job skills, job stability) also is evaluated. Such basic work abilities may be assessed further by having patients participate in a volunteer work trial within the hospital. Many patients complete the Home Independence Program and progress to the Work/School Re-Entry Program. In the past 5 years, 17% of the patients participated only in the Home Independence Program, 47% attended both programs, and 36% participated only in the Work/School Re-Entry Program.
Most patients in the Work/School Re-Entry Program attend therapies from 8:15 A.M. until 12:00 P.M., 4 days/week (Monday through Thursday) because they typically spend afternoons and Fridays at work. Generally, program therapists work directly with employers to facilitate the return-to-work process. At least one therapist supervises the patient at the work-site, acting as a liaison between the work environment and the treatment team. Patients who have participated successfully in a work or school environment for a minimum of 6 to 8 weeks are discharged from the Work/School Re-Entry Program.
ADHNR therapies are divided into group-based sessions and individual sessions.
Individual sessions address the specific discipline-related needs of patients within the context of improving home independence and returning to work or school. Patients’ treatment programs are individualized (i.e., they receive as much individual therapy as necessary), and they often see individual therapists several times a week. Individual therapies are partially directed by feedback from other therapists provided in daily staff meetings and group therapies. Importantly, many program activities are transdisciplinary and thus reinforced by multiple program therapists in individual sessions. For example, although there is a specific Datebook Group (described below), all program therapists assign and track memory assignments.
Milieu. The milieu session is 15 minutes long and occurs at the end of the morning. All patients and staff participate. As with all groups, the purpose of the meeting, which in this case is to “discuss the business, progress, and concerns of the day in a community fashion,” is reviewed. Patients are given the opportunity to lead the group and are responsible for calling on individuals who wish to raise issues. This session is also used to monitor how smoothly the program is operating (e.g., the status of completion of weekly checklists and how work and school trials are proceeding). Every Monday the designated leader of the Community Outing reviews relevant assignments and goals with each participant during Milieu. This type of activity holds patients accountable for their treatment goals in a therapeutic manner.
Milieu is also used to review and recognize the progress of individual patients (e.g., accomplishments during Cognitive Retraining, progress with physical therapy goals). Patient’s birthdays and their graduation from the program are recognized and celebrated with a cake. If a problem is interfering with a patient’s progress, it is discussed in the group, and input and suggestions are requested from staff and other patients.
On a monthly basis, all patients are asked to provide their impressions of all individual and group therapies. This information is discussed in staff meetings and is used in program development. The Milieu session is a pivotal example of the milieu treatment process at work.
Cognitive Retraining. The various cognitive retraining tasks used at the ADHNR offer an opportunity to work on a broad range of cognitive skills: attention and concentration, memory and learning, language, visuospatial abilities, executive functions (i.e., impulse control, planning, and organization), abstract thinking, and mental flexibility. A detailed description of the theoretical and practical issues involved in cognitive retraining is beyond the scope of this chapter and interested readers are referred to Klonoff et al. In essence, however, the ADHNR approach to cognitive retraining is to enhance patients’ functionality. Sessions are arranged in an effort to extract as much practical information as possible, to teach useful compensatory techniques, and to apply the experience to work or school.
Cognitive retraining, the first formal therapy session of the day, mirrors the expectation that patients must be productive from the beginning of the work day, as is the case for most jobs. It is conducted at several tables arranged close to each other within a large room. This arrangement produces a background ambient noise that approximates many work environments. Each staff member typically works with two patients during cognitive retraining sessions, producing a smaller social unit that requires a patient to interact with others in the roles of supervisor and coworker. Finally, cognitive retraining requires patients to strive to meet certain expectations relative to performance levels and work behaviors while observed closely by a “supervisor.”
Because cognitive retraining is structured to simulate a “real world” environment, it provides an excellent opportunity for treatment staff to observe how patients behave in such a setting. Such in vivo data are essential in guiding treatment decisions about whether and when patients should return to work. It has been a consistent clinical observation that problems that occur during cognitive retraining will likewise occur at work, only in a more severe form. For example, normal activities at nearby tables provide ample opportunities for impulsive, distracted, and disinhibited behavior to appear. Difficulties taking turns or tolerating others’ deficits and procedural rigidity will become evident within the interactions of the smaller work groups. In general, cognitive retraining allows therapists to evaluate quickly patients’ ability to follow directions and their overall social skills, level of awareness of deficits, extent of defensiveness, and the form it may take.8 This information is valuable in directing treatment efforts and in determining the appropriate time for a patient to return to work.
Once problem areas have been identified, the next task is to help patients develop effective compensations. Cognitive retraining assists this process in a number of ways. It offers numerous opportunities to discuss each patient’s cognitive strengths and difficulties, which facilitates the development of appropriate compensatory strategies for work. Daily sessions permit patients to practice these compensations repeatedly. Because of the highly quantifiable nature of the tasks, the effectiveness of a proposed compensation is immediately apparent. Weekly graphing of performance on various tasks provides an opportunity to observe and discuss changes in performance based on the effective use of compensations, neurological recovery, the benefits of practice, and so on. Finally, therapists use information shared in staff meetings to coordinate treatment interventions and to relate cognitive retraining compensations to those used in other program therapies (e.g., procedural checklists for computer-based tasks).
Cognitive Group. In keeping with the overriding goal of developing a therapeutic milieu, Cognitive Group provides a common foundation for all patients by presenting information relevant to brain injury from a wide spectrum of causes. Providing such information is intended to increase meaningful patient interaction about the recovery process and to promote group cohesion. Information is transmitted through lectures, reviewing handouts, viewing videotapes, and participating in exercises. Sessions are typically conducted by a neuropsychologist and a speech and language pathologist.
Cognitive Group modules cover a variety of topics, including Neuroanatomy, the Wall Chart, Strengths & Difficulties Lists, and Memory. Each topic offers considerable opportunity to increase patients’ level of awareness, as discussed below. Depending on the topic, size of the group, and amount of discussion, modules can last 3 to 8 weeks.
The longest and most intensive module covered is Neuroanatomy. Information is provided about the different parts and functions of the brain as well as different ways in which the brain can be injured. Toward the end of this module, patients view and discuss available diagnostic images of their own brain. The discussion is then related to the material that they have learned and to their own injury. The Wall Chart module examines the typical course of a neurological patient’s treatment, from injury through discharge from ADHNR. This “roadmap of recovery” covers the process of brain injury, recovery, and rehabilitation by patients placing themselves in the process and assessing their progress.
Because recall of information is an almost universal deficit after brain injury, an entire module is dedicated to memory. This module teaches patients about the complex process of memory, provides numerous methods to deal with memory loss, and offers extensive opportunities to practice such compensations. Finally, the Strengths & Difficulties Lists module requires patients to generate a list of their own areas of strength and deficits since their injury. To enhance their awareness, patients receive feedback from both therapists and other patients regarding the accuracy of their list.
Cognitive Group closely simulates a classroom environment. Patients are expected to take notes, and three of the four modules give tests at the end of material presentation. After attempting to answer questions from memory, patients then use their handouts to go over the test again and answer the items with a different colored pen. Cognitive Group is particularly relevant to patients attempting to return to formal education, but offers all patients a comparison to their earlier academic performances, again increasing awareness of the nature and extent of their injury-related deficits.
Current Events Group. This group meets once a week and usually is led by the Speech and Language Pathologist. It provides patients with the opportunity to refamiliarize themselves with events in the local and world news, a process that is usually interrupted during the early phases of recovery. It also offers another chance for patients to address a variety of cognitive and language deficits, including oral and written formulation, reading comprehension, memory, and abstract reasoning. This group also lends itself well to addressing pragmatic issues such as problems with hyperverbality, concrete thinking, and tangentiality. As with other group therapies, patients identify and review their main area of focus for the group on a weekly basis. Each patient is expected to read and summarize a newspaper article. During the session, patients present their article and then a discussion is held regarding other group members’ opinion of the issues raised. Each week a patient is selected to lead the overall discussion, and another is chosen to review the articles from the previous week. Patients returning to higher level administrative or professional positions are given the opportunity to oversee the smooth operation of the session (e.g., time management of all segments).
Group Psychotherapy. The structure and purpose of this session have been reviewed elsewhere. The group meets 4 times/week at the end of the morning, providing patients the opportunity to discuss relevant issues that may have arisen earlier in the treatment day. The group is open entry-open exit and is comprised of patients from both the Home Independence and Work Re-Entry Programs. Deciding when to begin patients in this group depends on a number of factors, including their ability to follow group discussions, sufficient control of their impulses and temper to tolerate discussion of sensitive issues, and a willingness to discuss personal issues. Most of the group discussion focuses on helping patients become more accepting of and realistic about the effects of their injuries; therefore, most patients must have at least some awareness of their injury-related deficits before starting the group.
Taking notes is encouraged to help patients recall previous discussions. Sometimes handouts are developed to summarize important topics that may have required several sessions to cover (e.g., the cause and management of depression). This group is much less structured than the other groups in that patients are encouraged to bring up any topic that involves feelings relevant to their recovery. Patients often use this session to elicit opinions or feedback from other patients who may have experienced similar challenges. Other media, including art therapy and music, are incorporated into Group Psychotherapy. Guest speakers (usually prior patients) talk with current patients about their progress since leaving the program and how their experiences have affected their impressions as they reflect on their own rehabilitation process. Such talks are usually quite inspirational and helpful to current participants because they demonstrate that there is “life after rehabilitation.”
Datebook Group. The Datebook Group meets twice/week to assist patients in using datebooks to compensate for memory difficulties; to plan and organize their daily schedules; and to become more independent in keeping track of appointments, events, and important information. Real world examples of the importance of organization and follow through at work and school help underscore the need to use a datebook consistently as a compensation.
Program therapists give patients multiple memory assignments as a way of practicing a number of skills. For example, patients must listen effectively to assignments to ensure staff expectations are fully understood and important details have not been missed and they must ask for clarification if necessary. They must develop the habit of carrying their datebook at all times to prevent the pitfall of jotting an assignment on a scrap of paper that could then be misplaced, forgotten, or lost in the disorganized clutter of a purse or wallet. They must write a relevant note in the correct location in the datebook. The note must be concise but contain enough detail so that the full assignment can be recalled and understood at a later time. Both in the program and at home, they must establish a routine for checking the datebook regularly to be cued by the relevant note to fulfill an assignment. Finally, they must not wait for the therapist to ask for the assignment to be completed (thereby cuing the patient). Rather, they must take the initiative to complete an assignment by its due date.
For each patient a “Memory Assignment Tracking Sheet” is kept in a central location on the unit to which all therapists have access. The staff records the date an assignment was given, the nature of the assignment, its due date, and whether it was successfully completed. Each patient’s progress in using the datebook is then measured monthly by calculating the percentage of assignments completed accurately. The goal is for patients to improve their datebook skills to the point of successfully completing at least 95% of their memory assignments.
Community Outings. After an initial evaluation period, the recreational therapist and other team members form a general opinion about whether a patient qualifies to participate in a group activity within the community. Community outings occur Monday afternoons from 12 P.M. to 2:30 P.M. and usually encompass both a meal at a restaurant and a visit to a local recreational resource (e.g., museum, shopping mall, park). The recreational therapist and neurorehabilitation aide oversee the organization and implementation of the outings. Depending upon patients’ needs, other therapists, including the occupational therapist, speech and language pathologist, or physical therapist, attend the outings. The recreational therapist and other team members can thereby further assess patients’ skill levels and the affect of their physical, language, and/or cognitive deficits on community functioning. Most importantly, any behavioral or interpersonal problems a patient demonstrates can be addressed in a supportive, yet therapeutic manner both within the community and later during individual sessions. Patients are also encouraged to generalize strategies learned in therapy to the outing. For example, the focus of outing strategies is often directed at the consistent use of a datebook system to compensate for memory difficulties.
There are two weekly outing planning sessions, the first to plan and the second to review each outing. Using a structured worksheet, the recreational therapist determines with the patient whether each task was completed independently, with cuing, or with assistance by a therapist. This worksheet also allows patients to chart their own progress independently, highlighting areas of concern in a manner similar to the Home Independence checklists or Cognitive Retraining graphs. Before successfully “graduating” from community outings, patients are expected to assume the role of “leader,” planning and implementing an outing.
Relatives’ Group. The weekly Relatives’ Group is an integral part of the rehabilitation process. It not only provides an opportunity for staff and family to discuss the patients’ progress or problems, it also facilitates dialogue among family members who are all attempting to cope with and adapt to their loved one’s injury. It is interesting and rewarding to watch family members who have been affiliated with the program for a longer time instruct and encourage new members. Understandably, relatives sometimes benefit more from discussion among themselves than from therapists’ input.
The structure and intent of this group are reviewed elsewhere.5 Briefly, the session begins with a review of the group’s purpose and the introduction of new members. Next, the patient’s progress and relevant treatment issues are discussed in a “round robin” format. As many staff members as possible are scheduled to attend the group to provide feedback from a multidisciplinary perspective. General topics (e.g., a description of the rehabilitation process via the Wall Chart, review of basic neuroanatomy, overview of different types of memory disorders and their compensations, and definition and management of the catastrophic reaction) also may be discussed in a didactic format, including the use of handouts and research articles.
Demographic and clinical data from the most recent 50 ADHNR patients reveal a number of changes compared to the first 50 patients treated (Table 1). The changes reflect a number of factors, including maturation of the staff’s clinical decision-making abilities, generally improved patient treatment over the years, and the impact of managed health care in the United States.
Injury-Admission Interval and Length of Stay
Because of skewed distributions of data, median values are reported and the two groups (first 50 and most recent 50 patients) were compared by nonparametric statistical analyses. Age and education remained the same, but the typical patient now seen at ADHNR has a more acute brain injury yet stays in the program less time than when the program started.
Because of this increased acuteness of injury, ADHNR treatment approaches have been modified. Many patients enter the program directly from an inpatient environment and have had little or no opportunity to try to function in their home or community since their injury. Consequently, the staff modified the pace of insight-oriented therapy to minimize alienation of patients or family. In other words, substantially more time is spent helping patients to recognize that they have suffered a brain injury that has caused functional problems that will affect their future. Therefore, many of the individual and group-oriented therapies focus on awareness training, particularly during the first several weeks after admission.
The length of stay at ADHNR is now significantly briefer than it was for the first 50 ADHNR patients (Table 1). One might argue that the team has become more efficient in helping patients achieve rehabilitation goals, but it is our clinical impression that staff, patients, and families often feel “rushed” by third-party payers to accomplish goals and discharge patients. Consequently, the clinical director spends a substantial amount of time communicating with third-party payers on behalf of patients to obtain funding for services and to extend funding so that treatment goals can be accomplished. The unfortunate reality of the current health care system is that the program must sometimes limit its scope of treatment to only certain goals that can be achieved within the externally imposed time limit.
The origin of brain injury in the current patient population of ADHNR differs from that of the original 50 patients (Table 1). The first 50 patients were predominantly individuals who had sustained TBIs (almost 75%). In contrast, the range of etiologies of the brain injuries in the most recent 50 patients is much wider: 54% were from TBIs, 8% from stroke, 10% from aneurysmal or arteriovenous malformation rupture, and 6% from surgery for epilepsy. The reasons underlying this shift in etiologies is unclear, but it may be a function of the community’s growing familiarity with the services provided by the ADHNR and a greater willingness to refer a variety of neurological diagnoses to the program as physicians obtain evidence of success with different types of patients.
Recently, the ADHNR has begun to treat patients with highly malignant brain tumors who are in the early phases of their illness and are still relatively healthy. The purpose is to improve the quality of life for these patients and to help them find some form of productive volunteer activity, even if it is time limited. The milieu of patients, staff, and other family members provides invaluable support to patients and their family, who often have been displaced from their work and community support network. Individual and group psychotherapy services and the Relatives’ Group are important sources of emotional support and education for both patients and family. The staff works closely with community resources to facilitate a smooth transition to hospice services when patients are no longer able to attend the program. Overall, patients are helped to come to terms with their prognosis and to participate in a supportive, therapeutic environment as long as possible.
Occasionally, patients who do not require full-time involvement with the program are admitted. Such cases are discussed extensively in staff meetings to ensure that no important treatment goals are overlooked and that changing the standard program is a better course of action than referring the patient to a different, less structured outpatient rehabilitation setting. The need for such program modifications can reflect a number of factors. First, a language barrier can reduce the number of therapies available for patients whose English-speaking ability is limited. Because several staff members are fluent in Spanish, the program can be modified to focus upon the specific job skills necessary for primarily Spanish-speaking patients to resume gainful employment. Some patients have had negative experiences at school and therefore resist the “academic” nature of some of the program’s tasks and groups. The program is then geared toward more hands-on tasks that patients can more easily perceive as relevant to their actual work. A modified program (with limited therapies and an accelerated return to work via a supervised work trial) may be considered appropriate for patients with mild or very circumscribed deficits. When a patient suffering from a severe case of unawareness threatens to leave the program precipitously, an earlier return to work will be allowed despite the strong misgivings of the staff in the belief that it is better for a patient to be involved at work with some staff involvement than to return to work independently with no support. Staff members can then help patients develop compensations at work and can serve as a buffer with the employer should difficulties arise. In such cases, patients remain in the program, if only on a part-time basis, to continue to work on improving their awareness of their deficits. It is also important to maintain ties to the program should such patients fail at a job because they will then need assistance even more than before.
Role of Psychiatric Consultation
As the ADHNR has evolved, a consultant psychiatrist has also become progressively involved in patient care. Although the psychiatrist has worked with the program for 12 years, his role has expanded. In the last several years, the psychiatrist has begun attending staff meetings on a monthly basis to discuss patients’ psychiatric status and to assist the staff with their empathic understanding and treatment of patients. Given the complex interplay among preexisting psychiatric disturbances, neuropsychological deficits, and patients’ emotional reactions to their injuries, the psychiatrist’s input has improved the staff’s understanding of patients’ overall emotional status. When appropriate, the psychiatrist prescribes psychotropic medications for patients experiencing significant depression and difficulties controlling their tempter. The psychiatrist has helped all staff to be more alert for suicidal tendencies. When patients have become dangerous to themselves or others, he has helped find more appropriate treatment environments (e.g., inpatient psychiatric hospitalization). The psychiatrist also facilitates discussion within staff meetings on how the staff is reacting to and coping with the demands of their work. This process has become particularly valuable as the treatment milieu has expanded to include terminally ill patients with brain tumors.
The psychiatrist is also available as a consultant to meet with the neuropsychologists to review important psychological constructs and treatment approaches. As a direct result, the psychotherapists have benefited from his insights into narcissistic injury, depression, and suicide.
The documentation process for patients at the ADHNR reflects the overall philosophy of the program. The program staff compiles an initial program summary after patients have completed a 2-week evaluation. This report is reviewed in detail with patients and family and often is their first opportunity to observe injury-related deficits in writing. The process is approached therapeutically—an attempt is made to increase the patient’s and family’s level of awareness but not to overwhelm or discourage them from continuing the rehabilitation process. Usually, the treating neuropsychologist is involved in presenting the initial program summary so that emotional reactions can be addressed quickly. Follow-up reports are prepared monthly, and a draft of each report is reviewed with patient and family.
As the program has evolved, the documentation process has also been modified. In 1992 a section on Working Alliance ratings was added. The staff’s, patients’, and family’s ratings of the working alliance are reported (see ADHNR Research). Reporting the working alliance from all three perspectives fosters an ongoing dialogue about how the rehabilitation process is unfolding and holds all parties accountable for their level of communication and engagement. Each report also offers patients and families an opportunity to document their impressions of the rehabilitation process and to provide feedback about the report.
Recently, the report review process was also modified for selected patients. Some patients have significant cognitive or language deficits and are in the most acute phase of their recovery when admitted to the program. If the entire team agrees (usually with input from the consultant psychiatrist) that a full review of the reports would be counterproductive, only the summary section, which focuses primarily on the intended therapies and goals, is reviewed. This recommendation is discussed with patients, and they are aware that a summary of the report is being presented to them. With their permission and if appropriate, the full report is reviewed with the family. Reports are often reviewed in more detail with the patient as the rehabilitation and recovery process unfolds.
Within the last 5 years, requests from former patients for some type of assistance after formal discharge from ADHNR have increased. This postprogram treatment is provided in several ways. First, some patients continue individual psychotherapy, often for several months. Other patients may not begin such individual or family therapy sessions until months or even years after discharge. In September 1994, an After-Care Support Group for patients who had completed the program was initiated. This group consisted of a core of five to eight individuals who regularly attended meetings twice a month. Because many of the members had gainful or volunteer positions, meetings were held after work hours in the late afternoon.
The sessions were facilitated by the two senior staff neuropsychologists and usually divided into two parts. In the first portion of the sessions, all members provided an update about their life during the previous 2 weeks. The remaining time was used to discuss topics of common interest, often generated by members in relation to issues they were dealing with at the time. If the members expressed no particular need, one of the neuropsychologists provided a topic for discussion, such as depression after TBI, relationships with family, whether and how to discuss their brain injury with others, or avoiding burn out in supervisors and/ or spouses. To help patients remember the discussions and to facilitate behavioral change, the minutes of each meeting were summarized (using members’ initials to protect confidentiality) and provided at the next meeting.
This initial group lasted just slightly more than 2 years, ending in October 1996 when several of the core members decided that they were functioning well enough to continue without the additional support of the group. Interestingly, most of this initial core group returned when the After-Care Support Group resumed about 1 year later, again, in response to the demand for such a service by former patients. The structure of the new session is basically unchanged from the earlier group, except more emphasis is placed on members developing a specific plan of action to address issues of particular concern.
For the first time, there was sufficient interest to create an After-Care Support Group for the relatives of patients. This group meets monthly and mostly consists of spouses of former patients, although parents and friends have also attended. That a substantial portion of patients continue with individual psychotherapy and/or the After-Care Support Group for patients and families clearly points to the need to address the long-term adjustment concerns of people with brain injuries.
Comprehensive, integrated outpatient day treatment programs such as the ADHNR are not only an intensive, demanding process for staff and patients but represent a considerably greater expense than traditional outpatient approaches. To some extent, this service can be justified by examining the overall costs of acquired brain injury to society as a whole. However, such programs must demonstrate their efficacy in improving the productivity of participating patients. Empirical evidence is necessary to establish the need for such multidisciplinary day treatment programs in the continuum of care for neurological patients.
Productivity, Working Alliance, and Work Trials in TBI Patients
In an effort to produce more methodologically sound research in the neurorehabilitation arena, Prigatano et al. used a historical control group in their outcome study of milieu-based rehabilitation. They compared the productivity of 38 patients who had completed the ADHNR program with 38 patients who were provided services in the same hospital before the ADHNR was implemented. For two reasons only TBI patients were included in the design. First, they composed the majority of rehabilitation patients at the ADHNR. Second, variance due to etiological differences was thereby minimized.
In addition to predicting a higher incidence of productivity in patients who completed rehabilitation, the authors also examined the effect of the working alliance and completion of a supervised work trial on outcome. They hypothesized that productivity rates would be greater among ADHNR Work Reentry participants who had either “excellent” or “good” working alliance ratings (as opposed to “fair” and “poor”), family working-alliance ratings of “excellent” or “good,” and who had successfully completed a supported work-trial experience.
Treated patients were matched with control patients for gender, age at injury, and Glasgow Coma Scale score. Although years of education and chronicity of injury were not equivalent between the groups, these variables were considered during analysis of the results. When asked “What best describes what the patient was doing most of the last week?”, 62.9% of the treated patients were gainfully employed full or part-time in contrast with 47.2% of the control patients. If attending school is considered productive, the difference in the combined totals (86.8% vs. 55.3%) was statistically significant. Of particular interest was the finding that while only one treated patient (2.9%) was considered by the respondent to be unable to work, 36.1% of the historical controls fell in this category.
This study also demonstrated the clinical utility of staff ratings of the working alliance. When treated patients with “excellent” or “good” working alliance ratings were combined and compared to those rated as “fair” and “poor,” the number of productive patients with positive ratings in the former group was significantly greater. Likewise, a similar comparison based upon working alliance ratings of family members proved statistically significant: better ratings were associated with a productive outcome. The final hypothesis approached significance (p<.07), providing some support for the idea that successful completion of a protected work trial contributes to more productive outcomes.
Outcome Adjusted for Injury Severity in Patients of Mixed Etiology
A second research study involving ADHNR patients incorporated functional impairment ratings at program admission into measures of rehabilitation outcome. From March 1992 to May 1996, this study examined 64 consecutive ADHNR admissions with brain injuries from heterogeneous etiologies.
A unique feature of this study was the use of an Adjusted Outcome score, which was defined as level of discharge productivity adjusted by staff ratings of functional severity of injury at program admission. The intent of the Adjusted Outcome measure was to provide an indication of the patients’ outcome relative to their level of functional severity at program admission. Thus, if patients exceeded outcome expectations based on the functional severity of their injury, their Adjusted Outcome score was positive. At discharge 89.5% of patients showed a fair or good adjusted outcome: 62% were gainfully employed or full-time students, and 15.6% had resumed their preinjury job. When full or part-time volunteer work was included, 82.8% of the patients in this sample were productive at discharge.
This study also examined the relationship of “process variables” to rehabilitation outcomes. Such process variables included Work Readiness, which was defined as the patients’ ability to return to their preinjury level of work or school (without modification), or their ability to hold a minimum-wage job if they were not working at the time of their injury. A second process variable, Work Eagerness, dealt with patients’ attitude and attempted to define patients’ level of motivation for returning to work or school. Each staff member independently rated each patient on the Work Readiness and Work Eagerness scales, and mean data were used for data analyses. Finally, ratings of working alliance between staff and patients were again examined as they related to patient outcomes.
The staff ratings of the patients’ Work Eagerness related to level of outcome at the time of program discharge; lower motivation was associated with less productivity at discharge. The motivation to work was often reduced in patients actively seeking financial compensation. This finding suggests that staff members’ clinical impressions of the quality of the patients’ motivation to work is an important factor in patients’ level of benefit from milieu-oriented rehabilitation and their ultimate level of work/school attainment. As in the previous study, a better working alliance between patient and staff predicted a better adjusted outcome. These data suggest that therapists who do not incorporate a “holistic” approach to patient treatment may overlook important attitudinal variables that may predispose patients to an unsuccessful outcome in terms of work and school re-entry.
Follow-up data were sought from all patients admitted to the program between May 1986 and May 1998 at 3 months and 1, 3, 5, 7, 9, and 11 years after discharge to determine the long-term productivity of patients who have participated in treatment at the ADHNR. In this cross-sectional evaluation (unpublished data), 164 patients with heterogeneous brain injury etiologies, representing 73.9% of patients successfully discharged from the Work/School Re-entry Program from its inception through 1998, were contacted. Productivity rates (defined as gainful employment, school, and/or volunteer work) and rate of employment (defined as work for pay) were determined. As long as 11 years after discharge, 83.5% of the patients were productive, and 67.1% were engaged in work or school: 46.3% were employed gainfully on a full-time basis, 11.6% were involved in full-time school or school and work, and 9.2% were involved in part-time gainful work or school. An important goal of the Work Re-Entry Program is to encourage productive work in some manner to increase patients’ quality of life. In that respect, another 12.2% of the patients were working as volunteers.
Compared to their pre-injury levels of employment or school, 16.2% of the sample returned to the same job without modifications. This finding supports our previous report that 15.6% of patients returned to the same position upon discharge from the program. Together, these data suggest that the proportion of patients who return to their pre-injury work status remains stable over time. In the current sample, another 16.2% of the patients returned to the same academic level or progressed from school to a work setting while 11.0% returned to the same job, but with modifications. Patients who returned to the same job without modifications were more likely to have sustained a mild injury, to have been admitted to the program soon after injury, and to have had a shorter length of stay than those who returned to a lower status at work after their injury. Better vocational and school outcomes were associated with high ratings of the working alliance between staff and patients and between staff and families, with young patients, and with male patients.
Productivity did not decline with time from discharge; that is, there were no significant differences in patients’ level of productivity and work/school activity across the follow-up period from 3 months to 11 years. This is the first such finding that extends to as long as 11 years after injury. In contrast, others report a decline in productivity over time.[1,14] These encouraging results suggest that the milieu-oriented rehabilitation process is, indeed, associated with enduring benefits for patients with brain injuries.
The ADHNR has now been in operation since 1986. The staff continues to build on available clinical and research knowledge in an effort to refine the holistic approach to the treatment of neurological insult. We are convinced that the milieu approach facilitates patients’ level of awareness and acceptance of their injury and assists with their reintegration into their home, community, work, and school environments. We will continue to maintain a strong commitment to the research component of the program, with an emphasis on demonstrating efficacy of services. Research endeavors will not only track long-term outcomes but will continue to identify and measure important “process” variables that reflect the underlying constructs of therapy, such as working alliance and motivation to work.
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- Klonoff PS, Shepherd J, Lamb DG: Management of patients with traumatic brain injury, in Simkins CN (ed): Analysis, Understanding, Presentation of Cases Involving Traumatic Brain Injury. Washington, DC: National Head Injury Foundation, 1994, pp 107-124
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- Prigatano GP, Klonoff PS, O’Brien KP, et al: Productivity after neuropsychologically oriented milieu rehabilitation. J Head Trauma Rehabil 9:91-102, 1994