SINCE THE LATE 1970s, post–hospital rehabilitation for individuals with acquired brain injury (ABI) has evolved toward a person-centered, participation-oriented (PCPO) approach. Briefly, PCPO rehabilitation makes participation goals identified by the person served and his or her close others the primary focus of rehabilitation. Goals to reduce impairments and increase activities are selected that contribute to the achievement of these primary participation goals. This contemporary approach to rehabilitation is different from traditional rehabilitation in 2 fundamental ways. (1) In PCPO rehabilitation, therapeutic activities are chosen to specifically achieve participation goals, whereas in traditional rehabilitation, an array of identified impairments is targeted for improvement. The philosophy of PCPO rehabilitation is that we all have strengths and weaknesses and not all personal weaknesses need to be addressed to be a fully participating and contributing member of society. (2) Participation goals that are the focus of rehabilitation are chosen by the person served in collaboration with his or her close others and in consultation with rehabilitation providers. In traditional rehabilitation, goals are typically prescribed by the provider.
Many of the principles of PCPO rehabilitation evolved from the holistic ABI rehabilitation methods developed by Yehuda Ben-Yishay1 and George Prigatano.2 These pioneer providers and theorists recognized that rehabilitation involving the whole person, that is, the physical, cognitive, emotional, social, and spiritual aspects unique to each individual, is required to assist the person to return to full functioning in family and community life. Subsequent to their early work, a number of studies in the nonveteran population reviewed elsewhere confirm the effectiveness of these methods.3–5 Expanding on early holistic ABI rehabilitation, contemporary PCPO rehabilitation emphasizes not only addressing the needs of the whole person but also focusing on participation goals and person-centered goal-setting. Basic principles of PCPO rehabilitation are outlined in Table 1.
PCPO rehabilitation combines elements of both the medical model and the social model of rehabilitation. The medical model aims to cure disease or impairment in the individual. In medical model PCPO rehabilitation, treatment is directed at reducing impairments that can be remediated and are relevant to achieving participation goals. In contrast to the medical model, the social model, which was initiated by individuals with spinal cord injury in the 1970s, aims to remediate the environment to make it more accessible and hospitable to the person with disability. For individuals with ABI, improving physical accessibility may involve standard interventions for those with mobility limitations as well as other accommodations for those with chronic sensory, postural, or other disabilities such as noise reduction or adaptive seating. For all people with disability, but especially for those with ABI, this environmental makeover includes the person's social environment. Rehabilitation providers assist those who are in regular contact with the person with ABI to learn to accommodate and respond adaptively to residual cognitive and behavioral disabilities that may persist for the person with ABI after formal rehabilitation is completed.
STANDARDIZED HOLISTIC EVALUATION
A comprehensive evaluation is essential for effective and efficient rehabilitation. However, to be cost-effective, the extent of the evaluation should match the complexity of the case. A single provider may complete a comprehensive evaluation of the physical, cognitive, emotional, spiritual, and environmental issues relevant for rehabilitation in cases of low complexity, for example, cases with a single, circumscribed problem such as memory complaints or depression without significant comorbidities. In more complex cases, an interdisciplinary rehabilitation team is often required. Although veterans in PTRPs have often sustained milder traumatic ABI, the presence of comorbidities such as posttraumatic stress disorder (PTSD), depression, or substance abuse often increases the complexity of these cases exponentially. In all cases, initial evaluation may reveal additional issues that require consultation both within and beyond the standard rehabilitation team (eg, vestibular, substance abuse, vocational specialists).
In PCPO rehabilitation, the evaluation is primarily functional. While medical conditions may be uncovered that necessitate referral for specialized treatment, the primary goal of the rehabilitation evaluation is to target issues that need to be addressed to achieve the realistic participation goals of the person served. An effective evaluation will identify, both within the individual and the environment, weaknesses that will interfere with participation goal achievement as well as strengths and resources that may be capitalized on in the pursuit of participation goals. As one of the few comprehensive measures specifically designed for use in post–hospital ABI rehabilitation, the Mayo-Portland Adaptability Inventory (MPAI-4) provides a useful tool for documenting the initial evaluation, developing goals based on the evaluation, and assessing outcome.6,7
MATCH EVALUATION/TREATMENT TO CASE COMPLEXITY
Not only the evaluation but also the rehabilitation treatment plan should reflect the complexity of the case for efficiency and cost-effectiveness. Effective rehabilitation may be focused and limited in the majority of cases. Nonetheless, more extensive and intensive rehabilitation will be required to achieve participation goals in cases in which ABI has resulted in an array of cognitive, behavioral, and emotional problems complicated by impaired self-awareness or comorbidities such as PTSD, depression, substance dependency, or chronic psychiatric conditions.8
COLLABORATIVE, PARTICIPATION-FOCUSED GOAL-SETTING
Accurate assessment and value-based goal-setting for treatment planning yield effective and cost-efficient treatment. Collaborative goal-setting focused on participation outcomes also forms the foundation for a therapeutic alliance with the patient and close others. The initial goal-setting process appropriately begins at a high level. As Stephen Covey states in describing 7 habits of highly effective people: “Begin with the end in mind.”9(p102) This means determining 1 or 2 participation goals that are of primary value to the participant and close others, such as paid employment or full participation in family life. Once these end goals have been identified, other intermediate goals can be identified that will be required to achieve these overarching participation goals.
In cases with impaired self-awareness, initial participation goals may be unrealistic. Nonetheless, in these cases, a straightforward process to identify and achieve intermediate goals that step toward the ultimate participation goal often helps in the development of more accurate self-awareness. For example, a participant with severely impaired cognitive abilities and impaired self-awareness may initially wish to return to a cognitively demanding job that was held previously. By mapping out and working toward intermediate goals (eg, improved attention and memory, no behavioral outbursts) that will need to be achieved to accomplish this ultimate goal, the participant may begin to build awareness of obstacles and the odds of overcoming these obstacles. As awareness builds, a more realistic participation goal can be negotiated. And very occasionally, the participant may surprise the rehabilitation team by sequentially achieving the intermediate goals set out in the rehabilitation plan and successfully accomplishing the ultimate participation goals. If impaired self-awareness is a primary obstacle to rehabilitation, a number of approaches and interventions are available to address this condition.10
SPECIFIC GOAL-ORIENTED TREATMENT PLAN
Once the ultimate participation goals for the individual served are identified, specific treatment interventions and goals can be documented in a formal treatment plan. Consistent with a holistic approach, the treatment plan describes interventions to address limitations and obstacles, as well as strengths and resources, relevant to participation goal achievement.
The initial treatment plan is developed by the treatment provider or team and then shared with the participant and, if appropriate, close others for their input. The positive impact of developing a therapeutic or working alliance has been increasingly underscored in ABI rehabilitation research.11,12 An open discussion of the treatment plan with the participant and close others with modification of the plan based on their input provides an opportunity to engage them in the treatment program and develop the therapeutic alliance. Regular, scheduled follow-up meetings with participants and close others are standard in rehabilitation. In conjunction with ongoing treatment encounters, these meetings provide additional opportunities to develop the therapeutic alliance and keep the treatment plan focused on the ultimate participation goals.
Active and current communication among rehabilitation team members is also critical for successful rehabilitation. Particularly in complex and challenging cases, significant disagreements about approaches as well as about specific interventions may develop among team members. Resolving these disagreements is often best done in meetings without the participant and close others present so that the treatment team can present as a unified team with a consistent treatment agenda to the participant and close others.
In developing the treatment plan, a number of considerations have become standard in ABI rehabilitation.7 These include the strategic use of procedural learning (ie, learning a specific skill through repetition), contextualized cognitive rehabilitation, social-communication skill training, and medications. Decisions will need to be made about whether obstacles to participation are best addressed through interventions directed at improving the adaptability of the participant or by developing environmental supports and assists. Throughout the treatment process, plans and practice for generalization to the participant's real life situation are essential to ensure the long-term maintenance of rehabilitation gains. The participant's involvement in work and independent living trials, as well as active participation of close others in the rehabilitation process, is often required to support a successful transition from the treatment setting to real life.
STANDARDIZED MONITORING OF PROGRESS
Progress and outcomes should be tracked using psychometrically sound, standardized measures.13 These measurements provide a solid basis for evaluation of progress by providers and for discussion with participants. The projected rate of progress will determine how frequently measurements are taken. For example, in cases where relatively rapid progress is expected, weekly measurements may be appropriate; in other cases that advance more slowly, every other week or monthly measurements may be sufficient.
Measures of progress will likely be different from outcome measures. More specific measures are most appropriate to monitor progress in areas targeted for intervention in the treatment plan, for example, the Everyday Memory Questionnaire13(pp235-239) for tracking progress in the use of memory compensation techniques or the Dysexecutive Questionnaire13(pp197-199) for monitoring improvement in self-management skills. Goal Attainment Scaling14 provides a useful metric for tracking progress on highly individualized goals. Measured progress—and changes in the treatment plan if progress is not at expectation—is communicated at regularly scheduled meetings among providers and with participants and close others.
In addition, documentation of individual progress over the entire course of treatment and for program evaluation is accomplished with a global outcome measure such as the MPAI-4.6 The degree to which the participant's primary participation goals were achieved at program end should also be documented. In some cases, the participation goals may be represented by specific items on the MPAI-4 or another participation measure. In cases for which the ultimate participation goal(s) are highly individualized, Goal Attainment Scaling may be the most appropriate measurement tool.
In addition to monitoring and recording progress in the individual case, program evaluation of all cases served within a facility, clinic, or other organized program over a specified period of time (eg, annually, semiannually) is recommended to systematically identify areas or types of cases in which the intervention approach may be improved. While average or median change on the global outcome measure may be used for program evaluation, the percentage of cases achieving a standard outcome benchmark is often more easily interpretable. The minimal clinically important difference15 has become an accepted benchmark to indicate the smallest change on a measure that is reliably associated with a meaningful change in the clinical status, function, or quality of life of the person served. The percentage of participants achieving a minimal clinically important difference over the course of treatment is easily calculated, as is the percentage of participants achieving an expected level of achievement on their individualized ultimate participation goals.
CAPITALIZE ON NONSPECIFIC EFFECTS
In research, nonspecific effects are all the factors that can positively influence treatment outcome but are not part of the specifically defined treatment under investigation. Examples include an expectation by the participant of a positive outcome, a positive relationship between the therapist and the therapy participant, increased attention from a therapist or other concerned person, and increased self-monitoring of the target behavior that in itself reduces the frequency of the behavior. These nonspecific effects have been collectively referred to as placebo effects in drug studies since a positive outcome for the group that receives only a placebo is attributed to nonspecific effects.
Controlling for nonspecific effects is important in interventional research to determine whether a positive outcome is specific to the treatment under investigation. However, assuming that a therapist is using evidence-based methods (ie, those that have empirical support), enhancing outcome with the use of nonspecific effects is not only acceptable but also arguably best practice. As mentioned previously, developing a positive relationship or therapeutic alliance with the participant and close others contributes to a positive outcome in addition to the positive specific effects of the intervention. Helping the participant develop hope, that is, a positive expectation for the outcome, and engaging the support of close others characterize the practices of the most effective therapists.
Although research clearly demonstrating the interaction between nonspecific effects and active rehabilitation treatment is lacking, clinical experience suggests that nonspecific effects, such as a therapeutic alliance and positive engagement in treatment, may be necessary (although not necessarily sufficient) for a positive outcome. For example, it is difficult to imagine successful rehabilitation in the absence of a positive relationship with the therapist or team or in the absence of expectations for improvement from both the participant and therapists. On the contrary, presenting a treatment program without enthusiasm or with skepticism to a participant runs the risk of nocebo effects, that is, nonspecific effects that negatively affect outcome such as negative expectations, loss of hope, or a conflictual relationship between the therapist and the participant. To accommodate individuals who may be unable or reluctant to travel to a treatment center, delivery of rehabilitation and therapeutic services over the telephone, Internet, or through computer programs is being increasingly explored. As research in the efficacy of such interventions proceeds, investigation of the possible development of a therapeutic alliance through remote contact or with a computer proxy or avatar will also be of interest.
FAMILY/CLOSE OTHERS PARTICIPATION
Family or another group of close others can provide essential emotional support for the participant going through a rehabilitation process. In addition, close others can be critical allies to reinforce generalization of skills learned in rehabilitation in the participant's real life.
The close others of people with ABI are often under considerable stress themselves. A quarter to a third of families are in some degree of distress or dysfunction at the time that one of their members experiences ABI.16 Ramchand and colleagues17 in their report from the RAND Corporation detail the emotional and financial stress that results for close others of veterans with ABI. The distress that these close others experience may limit the support and assistance that they can give to the participant with ABI. A number of educational and coping skills interventions,18–21 some specific to veteran families,20,21 have been developed to assist families and close others in coping with ABI. These and the experience of veteran families with ABI are described in greater detail by Malec and associates.22
Despite the significant support and critical reinforcement for generalization of rehabilitation learning that close others can provide, occasionally the family or social support system of the participant may be extremely dysfunctional, chaotic, or antisocial. In such cases, assisting the participant to develop and transition to a more constructive social support network is the best course of action.
From the beginning of and throughout the rehabilitation process, planning for generalization and discharge should be part of the treatment plan. Such planning typically involves anticipating and addressing obstacles to transferring skills and activities learned in rehabilitation to real life and developing opportunities to practice skills learned in rehabilitation in daily life. Practice for generalization may include organized independent living trials or trials of work or school. As mentioned previously, family and close others can be key allies in implementing these trials and in prompting and reinforcing transference of skills learned in rehabilitation into the participant's daily life. Engaging other sources of environmental and social support also often becomes part of the plan for generalization.
Following discharge from formal rehabilitation, most participants will benefit from planned follow-up to check whether gains made are being maintained and, if initial gains during rehabilitation begin to wane, from rehabilitation refreshers. Rehabilitation participants with an array of residual impairments and other obstacles to community reintegration will benefit from the more extended and organized process of case management described by Resource Facilitation.23,24 Resource Facilitation is often focused on return to work or school. In their introductory article to this Special Section, Wehman and colleagues elaborate the vocational principles and methods recommended for optimizing return to productive activity and work for veterans with ABI and other comorbidities.
VETERANS ADMINISTRATION PROGRAMS FOR ABI REHABILITATION
Rehabilitation for veterans with ABI is provided through the Veterans Administration's (VA's) Polytrauma System of Care (https://www.polytrauma.va.gov). This system of care is led by 5 regional Polytrauma Rehabilitation Centers (PRCs) that provide acute, comprehensive inpatient rehabilitation. Associated with each of the PRCs is a Polytrauma Transitional Rehabilitation Program (PTRP). PTRPs aim to assist the veteran in making a successful transition into the least restrictive and most appropriate community setting that may include family life, military services, other work, or school. Although the PTRPs are associated with PRCs, all veterans and service members who may benefit from the services provided at the PTRPs are offered admission to these programs. This includes persons who struggle with community reintegration following acute rehabilitation, those who experience decline in functional performance, and those who previously either refused or were not offered transitional rehabilitation services.
Since implementation in 2007, the PTRPs have experienced growth in the number of persons served, services provided, and enhancements of the environment of care. All 5 PTRPs have moved into new spaces that provide a living rather than institutional environment and have added services such as wellness, complementary and alternative medicine modalities, and supported employment. While community reintegration is the stated goal of the PTRPs, the other components of the Polytrauma System of Care also incorporate it into the care delivered. This effort is facilitated by a national templated Individualized Rehabilitation and Community Reintegration (IRCR) Plan of Care that guides services from acute rehabilitation to outpatient rehabilitation and to long-term follow-up for persons with traumatic brain injury (TBI)–related chronic disabilities. Elements of the IRCR are often addressed in collaboration with non-VA partners including service organizations, nonprofit and for-profit organizations, and other community providers. The primary challenge throughout the development of the PTRPs has been having sufficient flexibility in the system to allow for program modifications based on the needs of the veterans served.
The operation and effectiveness of the PRCs have been recently described elsewhere.25,26 This current special section focuses on the PTRPs. With their focus on community reintegration, the PTRPs implement the principles of PCPO rehabilitation described in this introduction and in Wehman and colleague's introduction to vocational rehabilitation principles and methods. Cornis-Pop and associates provide an overview of the systems within the VA Polytrauma System of Care that support community reintegration for veterans and service members with TBI and polytrauma. Pastorek and colleagues describe methods used in concurrent treatments of mental health and TBI and outcomes of these interventions. Ottomanelli and colleagues outline current practices and future directions for vocational rehabilitation within the Polytrauma System of Care. Ropacki and associates conclude this special section with their description of the goals and outcomes of the PTRPs.
1. Ben-Yishay Y, Prigatano GP. Cognitive remediation. In: Rosenthal M, Griffith ER, Bond MR, Miller JD, eds. Rehabilitation
of the Adult and Child With Traumatic Brain Injury. Philadelphia, PA: FA Davis; 1990:393–400.
2. Prigatano GP, Fordyce DJ, Zeiner HK, Roueche JR, Pepping M, Wood BC. Neuropsychological Rehabilitation
After Brain Injury. Baltimore, MD: Johns Hopkins University; 1986.
3. Cicerone KD, Dahlberg C, Malec JF, et al Evidence based cognitive rehabilitation
: updated review of the literature from 1998 through 2002. Arch Phys Med Rehabil. 2005;86:1681–1692.
4. Malec JF. Post-hospital rehabilitation
. In: Zasler ND, Katz DI, Zafonte RD, eds. Brain Injury Medicine. 2nd ed. New York, NY: Demos; 2012:1288–1301.
5. Ponsford J, Sloan S, Snow P. Traumatic Brain Injury: Rehabilitation
for Everyday Adaptive Living. 2nd ed. New York, NY: Psychology Press; 2013.
6. Malec JF, Lezak MD. Manual for the Mayo-Portland Adaptability Inventory. 2nd ed. http://www.tbims.org/combi/mpai
. Published 2008. Accessed October 22, 2018.
7. Malec JF. Comprehensive brain injury rehabilitation
in post-hospital treatment settings. In: Sherer M, Sander AM, eds. Handbook on the Neuropsychology of Traumatic Brain Injury. New York, NY: Springer; 2014:283–307.
8. Malec JF, Degiorgio L. Characteristics of successful and unsuccessful completers of three postacute brain injury rehabilitation
pathways. Arch Phys Med Rehabil. 2002;83:1759–1764.
9. Covey SR. The Seven Habits of Highly Effective People. New York, NY: Simon & Schuster, 2013.
10. Ownsworth T. Self-identity After Brain Injury. New York, NY: Psychology Press; 2014.
11. Evans CC, Sherer M, Nakase-Richardson R, Mani T, Irby JW. Evaluation of an interdisciplinary team intervention to improve therapeutic alliance in postacute brain injury rehabilitation
. J Head Trauma Rehabil. 2008;23:329–338.
12. Schonberger M, Humle F, Teasdale TW. The development of the therapeutic working alliance, patients' awareness and their compliance during the process of brain injury rehabilitation
. Brain Inj. 2006:20:445–454.
13. Tate RL. A Compendium of Tests, Scales, and Questionnaires: the Practitioner's Guide to Measuring Outcomes After Acquired Brain Impairment. New York, NY: Psychology Press; 2010.
14. Malec JF. Goal attainment scaling in rehabilitation
. Neuropsychol Rehabil. 1999:9:253–275.
15. Copay AG, Subach BR, Glassman SD, Polly DW, Schuler TC. Understanding the minimum clinically important difference: a review of concepts and methods. Spine J. 2007;7:541–546.
16. Sander AM, Sherer M, Malec JF, et al Preinjury emotional and family functioning in caregivers of persons with traumatic brain injury. Arch Phys Med Rehabil. 2003;84:197–203.
18. Backhaus S, Ibarra S, Parrot D, Malec J. Comparison of a cognitive-behavioral coping skills group to a peer support group in a brain injury population. Arch Phys Med Rehabil. 2016;97:281–291.
19. Kreutzer JS, Marwitz JH, Sima AP, Godwin EE. Efficacy of the Brain Injury Family Intervention: impact on family members. J Head Trauma Rehabil. 2015;30:249–260.
20. Moriarty HJ, Winter L, Robinson K, et al A randomized controlled trial to evaluate the Veterans
' In-home Program for military veterans
with traumatic brain injury and their families: report on impact for family members. PMR. 2016;8:495–509.
21. Perlick DA, Straits-Troster K, Strauss JL, et al Implementation of multifamily group treatment for veterans
with traumatic brain injury. Psychiatr Serv. 2013;64:534–540.
22. Malec JF, van Houtven C, Tanielian T, Atizado A, Dorn MC. Impact of TBI on caregivers of veterans
with TBI: burden and interventions. Brain Inj. 2017;31:1235–1245.
23. Malec JF, Buffington ALH, Moessner AM, Degiorgio L. Evaluation of a medical/vocational case coordination system for persons with brain injury. Arch Phys Med Rehabil. 2000;81:1007–1015.
24. Trexler LE, Parrott DR, Malec JF. Replication of a prospective randomized controlled trial of resource facilitation to improve return to work and school after brain injury. Arch Phys Med Rehabil. 2016;97:204–210.
25. Gray M, Chung J, Aguila F, Williams TG, Teraoka JK, Harris OA. Long-term functional outcomes in military service members and veterans
after traumatic brain injury/polytrauma inpatient rehabilitation
. Arch Phys Med Rehabil. 2018;99(2)(suppl 1):S33–S39.
26. Ropacki S, Nakas-Richardson R, Farrell-Carnahan L, Lamberty G, Tang X. Descriptive findings of the VA Polytrauma Rehabilitation
Centers TBI Model Systems National Database. Arch Phys Med Rehabil. 2018;99:952–959.