Person-centered, Participation-oriented Brain Injury Rehabilitation

By James F. Malec, Ph.D., ABPP-Cn, Rp, Senior Research Professor Emeritus, Physical Medicine and Rehabilitation, Indiana University School of Medicine, Emeritus Professor of Psychology, Mayo Clinic

In the 1970s, we began to figure out how to provide brain injury rehabilitation. Before that, since emergency response services were very limited, people usually died shortly after a serious BI. Grimly, rehabilitation was not required. At its start, Brain injury rehabilitation was prescriptive (that is, doctors ordered specific therapies) and focused primarily on reducing impairments. Then early Brain injury rehabilitation pioneers like Yehuda Ben-Yishay and George Prigatano introduced the idea that Brain injury rehabilitation should be holistic. Holistic rehabilitation addresses the needs of the whole person and their family group, not just obvious impairments. Since those early years, Brain injury rehabilitation has become increasingly person-centered and participation focused. Person-centered, participation-oriented rehabilitation (PCPO) addresses the needs of the whole person as communicated by the person with brain injury and his or her close others rather than as prescribed by the provider. PCPO only targets impairments for intervention that interfere with the person’s return to participation in family and community life. We all have our strengths and weaknesses. Fortunately, we do not need to be perfect to have a good life. PCPO focuses on resolving problems that make it difficult for the person with brain injury to have a good life and makes the most of his/her strengths and resources in achieving this goal.

PCPO is grounded in both the medical model and the social model of rehabilitation. The medical model aims to fix what’s wrong with you. PCPO offers treatments and therapies that remediate impairments that interfere with the person’s participation in life. However, as people with spinal cord injury taught us in the 1970s, the environment in which a person operates can make impairments worse (stairs can’t be climbed in a wheelchair) or better (available ramp or elevator). For people with brain injury, social model interventions include not only modifications to the physical environment like noise reduction and reminder systems but also adaptations in the social environment like developing understanding and support from family and co-workers.

Once initial goals have been determined, the rehabilitation providers will need to develop a specific, goal-oriented treatment plan that describes the interventions and intermediate goals to help the participant achieve his/her ultimate participation goals. Although some aspects of the treatment plan may be technical like describing specific therapy techniques, the plan is thoroughly reviewed with the participant and close others. The participant may not agree with or see the sense of all aspects of the plan but should feel that it is “worth a try.”Discussion of the results of a thorough evaluation leads to collaborative, participation-focused goal setting with the participant and close others. To begin with, one or two major goals are chosen, such as participating in more enjoyable family activities or getting a job. The major goals should be of high value to the participant and his/her close others. After that, the rehabilitation team helps map out the intermediate goals that need to be achieved in order to accomplish the major participation goals. For example, developing a memory compensation system may be needed to support getting back to work, or learning anger management techniques may make for more enjoyable family time. In some cases, the rehabilitation team or close others may feel that the participant’s goals are unrealistic. In these situations, mapping out intermediate goals and starting to work on them will help the participant, close others, and the rehabilitation providers discover if these goals are realistic. If accomplishing intermediate goals is more challenging than expected, this usually means that the ultimate participation goal needs to be modified. The process begins with a standardized holistic evaluation that leads to an effective and efficient individualized rehabilitation plan. To be cost-effective, the extent of this evaluation as well as subsequent treatment should match the complexity of the case. A single provider may perform an initial evaluation and bring in other providers as needed. Individuals with a wide array of limitations due to brain injury or whose lives are complicated by psychological or social issues typically require evaluation by a rehabilitation team as well as other medical and community consultants. These evaluations are functional. The goal is to identify issues and resources, strengths and weaknesses that are relevant to the person’s return to rewarding participation in family and community life.

An important part of successful rehabilitation is developing a therapeutic alliance. Therapeutic alliance means that the participant and the provider respect each other and have confidence that both will do their part to achieve the participant’s goals. Discussion of the evaluation and treatment plan begins this critical process. In a sense, the treatment plan is a contract between the rehabilitation provider and the participant that describes what the provider will do and what the participant is expected to do. To make sure that learning in therapy translates into real life, one of the participant’s responsibilities will be to work on goals outside of therapy (“homework”).

The treatment plan is a living document that can and should be modified if progress is not being made. Standardized monitoring of progress is one of the provider’s responsibilities using measures with that have been shown by researchers to be reliable and valid. Overall gains in a program should be evaluated using a well-established outcome measure like the Mayo-Portland Adaptability Inventory (MPAI-4) as well as by tallying achievement of major participation goals. The overall outcomes of a program for past participants as demonstrated by gains on a measure like the MPAI-4 is one indicator of the quality of the program. Intermediate goals may be measured with more specific, standardized measures like those for functional memory, mood and behavior, or mobility. Goal Attainment Scaling provides a method for measuring and tracking highly individualized goals. Goal Attainment Scaling is a process of rating the achievement of an individualized goal on a 5-point scale ranging from “much less than expected outcome” to “much better than expected outcome.”

High quality PCPO programs use evidence-based interventions, that is, interventions that have been found to be effective by the best scientific evidence available. Research to establish the effectiveness of interventions controls for nonspecific effects, also known as placebo effects, like belief or expectation on the part of the therapist or the participant that the intervention will be effective. However, in clinical work, good therapists who are using methods that have scientific support also make the most of nonspecific effects and work to help participants feel motivated and successful and to look forward to therapy. A positive therapeutic alliance can create a powerful nonspecific effect.

Good therapists also encourage the participation of family and close others to the degree that is comfortable for the participant. Close others provide emotional support for participants and help reinforce participants in practicing skills learned in therapy in their daily life. A participant’s brain injury and rehabilitation are also often stressful for his or her close others. These individuals may need support, including psychological or family therapy if the stress and distress is severe.

From the very beginning of therapy, the rehabilitation team plans with participants and their close others for transferring skills learned in therapy to real life and maintaining gains after discharge. Such efforts often include independent living trials and trials of work or school. Post-discharge planning often involves assisting the participant to engage with other sources of environmental and social support in addition to close others. The discharge plan also typically includes a schedule for follow-up by rehabilitation providers to make sure progress made in rehabilitation is maintained with an option for further rehabilitation if gains are being lost.

PCPO finds its roots in the early work of Brain injury rehabilitation pioneers and is also reflected in more contemporary approaches like Cognitive Orientation to daily Occupational Performance (CO-OP). The principles of PCPO described here are currently used in residential, outpatient, and community-based post-hospital brain injury rehabilitation programs in the United States and other countries as well as in the U.S. Veterans Administration.

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This article originally appeared in Volume 13, Issue 3 of THE Challenge! published in 2019.