Overview

Neuropsychological assessment has become increasingly important in inpatient settings since the expansion of brain injury rehabilitation programs in the 1980s.^84,309 Patients with brain injury or other neurologic conditions (e.g., stroke, multiple sclerosis) now comprise a large segment of the rehabilitation population, as do older adults with nonneurologic impairments who also show cognitive effects of normal aging that should be considered in rehabilitation planning.²¹⁹ Inpatient screening by the rehabilitation psychologist is a standard and important component of the care of these individuals, consistent with best practices guidelines advanced by the U.S. Department of Veterans Affairs³⁷⁸ and endorsed by the American Academy of Physical Medicine and Rehabilitation.³ Outpatient assessments of neuropsychological functioning are also critical for continuing treatment planning, making educational/vocational recommendations, and tracking outcome.³³⁶

Inpatient Neuropsychological Assessment

Early rehabilitation neuropsychology assessments can take different forms, depending on the patient’s mental status. For patients at a low level of consciousness, initial (and serial) assessment with brief screening measures (e.g., Coma/Near Coma scale,³⁰⁰ Orientation Log¹⁸⁰) can identify subtle changes in cognitive functioning that are not apparent from casual observation. Such early information regarding recovery of orientation can also help predict functional outcomes at discharge.⁴¹²

For individuals at Rancho Los Amigos Scale VI and above, neuropsychological testing early in acute rehabilitation provides a baseline against which changes in functioning over time can be documented. Testing during this phase also provides an early indication of patients’ potential for improvement over time. Early cognitive screening can predict later need for supervision¹⁶² and functional outcomes.^98,337 It should also be noted that performance on neuropsychological testing after the resolution of posttraumatic amnesia has been associated with return to productivity (employment or attending school) at 1-year postinjury.^{32,73,178,320} Neuropsychological assessment results during this period more directly predict functional outcomes among individuals with TBI than does injury severity.^51,271 Information from baseline testing can also be incorporated into education for family members to help them understand the sources of certain troubling behaviors (e.g., neglect, impulsivity), and to begin to envision the range of possible outcomes and start to cope with potential long-term sequelae.

Neuropsychological testing of the fully oriented patient can be a vital component of rehabilitation planning and treatment. The resulting data document cognitive strengths and weaknesses that enable the rehabilitation psychologist to suggest useful strategies for promoting learning and fostering participation in rehabilitation, and to call attention to potential barriers to progress.³⁴⁴ Neuropsychological assessments involve the evaluation of fundamental skills (e.g., attention, information encoding), which underlie more complex behaviors that are the goals of other therapies (e.g., learning to use adaptive equipment). Armed with a map of the patient’s “cognitive landscape,” the rehabilitation psychologist can work with the team to develop intervention strategies for maximizing the patient’s success in acquiring the skills that are the goals of therapy.

In inpatient settings, rehabilitation psychologists identify neurobehavioral problems (e.g., depression, irritability, fatigue, restlessness) that are frequently reported after brain injury.³²⁷ These difficulties can impede participation and gains in rehabilitation,²⁹⁴ and they also have long-term functional implications.⁴⁸ Depression can result from neurologic changes,¹²³ adjustment-related issues,³¹⁷ and/or premorbid personality and psychiatric difficulties.²⁹⁴ Depression can significantly limit a patient’s ability to learn new skills in rehabilitation.²⁹⁴ Those experiencing significant depression often evidence greater functional limitations than cognitive test scores alone would predict. When such a discrepancy is uncovered, rehabilitation psychologists can highlight the interplay between psychological issues and functional performance, and assist the team in developing behavioral strategies to minimize this impediment to progress.

For individuals nearing discharge from acute rehabilitation, neuropsychological testing can inform recommendations about important postdischarge issues and complex activities such as the ability to live independently,³⁵⁸ to return to work or school,³⁸ and to resume driving.²²⁹

Many patients for whom brain-related insults are not the primary admission diagnosis might also benefit from neuropsychological testing. For example, approximately half of individuals with SCI have evidence of TBI,⁸⁷ a comorbidity that is seen as a particularly challenging one in rehabilitation,³¹⁰ and one associated with more limited functional gains during rehabilitation²²⁴ and increased costs.³⁹ Because their TBI-related impairments are typically more subtle than those of individuals with a primary TBI diagnosis, neuropsychological testing of individuals with SCI can be more sensitive to their cognitive impairments than are broader screening measures such as the FIM.³⁹

Elderly patients admitted for nonneurologic problems can also benefit from inpatient neuropsychological testing. Research indicates that cognitive deficits occur with equal frequency among elderly individuals admitted for rehabilitation after lower limb fractures and those being treated for stroke.²³⁷ Neuropsychological testing of these individuals can raise awareness of subtle cognitive difficulties that might affect participation in rehabilitation. In addition, dementia appears to be more common in geriatric rehabilitation populations than in elderly individuals living in the community, but it often remains undetected in rehabilitation settings.²¹⁸ Neuropsychological screening is recommended for uncovering cognitive deficits and for identifying priorities for intervention during rehabilitation and in the context of discharge planning.²¹⁹ Assessment of cognitive functioning has also been shown to predict outcomes in elderly individuals admitted to rehabilitation for such conditions as hip fractures.¹⁷⁰

Outpatient Neuropsychological Assessment

Even when assessments have been completed in the inpatient setting, outpatient neuropsychological testing is often a valuable component of follow-up care for rehabilitation populations with neurologic conditions.²⁶⁹ Although inpatient assessments provide valuable baseline data, numerous factors can affect recovery over time,³⁹⁶ and declines in cognitive functioning might even occur in a small portion of individuals. In these situations, follow-up outpatient neuropsychological testing can signal the need for further medical workup. In addition, when compared with inpatient testing results, outpatient neuropsychological assessments allow determination of changes in functioning over time. These are important data, given the observed variability in patients’ recovery patterns.²⁵⁷

Neuropsychological testing can be particularly valuable in deciding whether outpatient rehabilitation services are likely to be helpful for individuals who first present to physiatry clinics later in their recovery. The testing data can aid in decision making about interventions for cognitive deficits, such as the use of neuropharmacologic treatments.⁴¹⁶ As with inpatient evaluations, the rehabilitation psychologist strives to differentiate the relative contributions of neurobehavioral, psychological, and cognitive issues to daily functioning, because this can have direct implications for treatment planning. For example, if poor daily memory functioning is due to emotional distress, psychotherapy for adjustment issues or psychopharmacologic treatment, or both, would be indicated rather than training in compensatory strategies.

Outpatient neuropsychological assessments also play an important role in educating the patient and family about ongoing cognitive and neurobehavioral consequences of the injury or insult, and promoting advocacy for the patient and family. While teaching the patient and family members about the patient’s condition is a primary goal in the inpatient setting and can have positive benefits on patient outcomes,²⁸⁵ families and patients rarely retain all information provided to them. A follow-up consultation after the patient has had real-life experiences of success and failure provides an opportunity for the rehabilitation psychologist to draw connections among the patient’s medical condition, neuropsychological functioning, and daily difficulties. The implications of neuropsychological test performance for daily functioning are discussed. This discussion also takes into account changes secondary to recovery of functioning and development of new compensatory strategies, as well as changes in situational factors. Assessment findings form the basis for specific recommendations regarding adaptation tactics that can be used in patients’ daily lives (e.g., memory notebooks), and for guidance regarding how to achieve or adjust as necessary long-term goals such as returning to work, school, or independent living.²⁹²

For many individuals with persistent cognitive limitations, outpatient neuropsychological testing provides a basis for addressing issues related to disability. In addition to being associated with concurrent levels of productivity,¹¹ outpatient testing at 5 months postinjury predicts return to productivity at 1 year postinjury.¹⁵⁸ While many individuals resume working or attending school, accommodations or assistance might be needed, and test results can help clarify just what special provisions are needed. Not only can neuropsychological testing document cognitive strengths and weaknesses for determinations of eligibility for state services (e.g., vocational rehabilitation), but it can also help guide the nature of the services that are provided. As detailed in subsequent sections, neuropsychological testing can drive recommendations regarding accommodations in the educational realm. For those individuals unable to work because of their neurologic condition, neuropsychological testing is often relied on in determinations of disability by government as well as private organizations.³⁵⁶

Domains Assessed

Primary domains assessed in neuropsychological evaluations include intelligence, academic ability, memory, attention, processing speed, language, visual-spatial skills, executive abilities, sensory-motor functions, behavioral functions, and emotional status.²¹⁷ Box 4-2 shows selected neuropsychological measures grouped by primary cognitive domain. (Virtually all neuropsychological tests are multifactorial, so the groupings in Box 4-2 are based on the presumed major cognitive skill required by the test.) While a deficit in any area can have a significant impact on functional outcomes for a given patient, large-scale studies suggest that memory, attention, and executive functioning have particular relevance for rehabilitation populations, including individuals with TBI.¹⁵¹

Memory impairments are prevalent after acquired neurologic injuries such as TBI²⁴⁴ and stroke,¹² and can be significantly disruptive to the rehabilitation process. Memory problems can interfere with a patients’ ability to learn and retain new skills and/or develop compensatory strategies taught by rehabilitation providers. Memory problems can significantly hamper the achievement of important functional outcomes and productivity.^32,156

Attention is a multifaceted construct that underlies all other cognitive skills and is especially important for intact memory functioning, because information that is not attended to cannot be recalled at a later time. Components of attention include focused attention, sustained attention, selective attention, alternating attention, and divided attention.³⁴⁴ In addition to memory problems, attention deficits are among the most commonly reported difficulties in persons with TBI²⁰⁸ and in those with a history of stroke.²¹⁵ Deficits in attention are also associated with relatively poorer long-term functional outcomes, including diminished likelihood of returning to work and independent living.⁴⁷

Executive functioning is a complex cognitive domain encompassing multiple skills that pervade all aspects of daily life. Neural systems engaged in executive functioning involve interconnections of diverse neuroanatomic regions,¹³⁹ but the frontal lobes are viewed as especially vital. Executive functioning deficits include difficulties with problem solving, reasoning, planning, response inhibition, judgment, and use of feedback to modify one’s performance, as well as behavioral deficits such as problems with self-awareness and poor motivation. Neuropsychological tests typically focus on evaluating cognitive manifestations of executive dysfunction. Behavioral evaluation of executive functioning relies to a great extent on observations in natural settings, but some behaviors might emerge during testing. Several questionnaires are specifically designed to detect these behavioral issues, such as the Frontal Systems Behavior Sale (FrSBe).¹⁵² Deficits in executive functioning predict important outcomes such as poor quality of life¹⁷⁴ and functional outcomes.²¹⁵

Fixed Versus Flexible Batteries

Rehabilitation psychologists must balance the relative costs and benefits of fixed versus flexible assessment batteries in neuropsychological assessments. With fixed batteries, such as the expanded Halstead-Reitan battery,¹⁶⁶ the same set of tests is administered to all patients, regardless of the referral questions, and the normative data for all tests are based on a single population. Because all tests are co-normed, proponents of this approach assert that this allows for more confidence in drawing conclusions about an individual’s strengths and weaknesses, based on variability in performances across tests. Because a wide range of domains is evaluated, the rehabilitation psychologist might also identify strengths and weaknesses that were not anticipated on the basis of the referral questions or other information such as lesion locus.¹⁹¹

Another variant of the fixed testing approach involves the use of a test battery that is population specific¹⁵ and is developed by the rehabilitation psychologist for use with a particular patient cohort (e.g., individuals with a particular diagnosis such as multiple sclerosis).²³ With this type of fixed battery, rehabilitation psychologists can amass their own clinically based normative data sets against which new patients can be compared. This approach also promotes research opportunities, because psychological and neuropsychological factors that influence participation in rehabilitation and outcomes after discharge can be identified and evaluated.

While strengths of these fixed testing approaches are numerous in the rehabilitation setting, there are some disadvantages. For example, fixed batteries can take 4 to 6 hours or longer to administer, rendering them unsuitable where there are time constraints (e.g., in inpatient settings where there is competition from other therapies for patient time) or where patient stamina is limited. The structure of a fixed battery also does not allow for a targeted assessment of difficulties, which can have greater utility for treatment planning.

As a result, the generally preferred alternative is a flexible testing approach, one in which a core set of measures is supplemented with additional tests that are selected depending on the referral question.²⁵⁵ As the evaluation unfolds, measures can be added or subtracted according to early findings, as strengths and weaknesses become apparent. The examiner might elect to probe certain areas in more detail to clarify their therapeutic import. At the core of this approach is the notion that flexible batteries allow for personalization of an assessment based on patient needs.¹⁵ Flexible batteries seem more responsive to the constraints of inpatient rehabilitation settings and are the preferred approach of most neuropsychologists, regardless of work setting.²⁹⁷

Modifying Tests for Special Populations

In rehabilitation settings, perhaps more than in any other, psychologists must be aware of factors that can produce “construct-irrelevant variance”²⁵² in the assessment of persons with disabilities. These influences can cause spurious elevations or depressions in test scores and result in misleading inferences about the patient’s abilities and deficits. Given that most neuropsychological measures were developed for assessment of physically healthy people, the norms might not apply to those with certain disabilities. Scores on most neuropsychological tests can also be skewed by such influences as pain, fatigue, visual difficulties, and motor impairments, problems that are quite common among rehabilitation populations. These effects should be eliminated, or at least minimized, so as not to obscure assessment of the neuropsychological phenomena of interest.

A related sort of distortion can occur with instruments intended to assess personality or emotional status, because phenomena that constitute “symptoms” for nondisabled individuals might not carry the same (or any) psychologically relevant diagnostic meaning for those having disabilities. For example, the Minnesota Multiphasic Personality Inventory–2 (MMPI-2) contains items dealing with bowel function, sensory changes, and other physical phenomena that are typical consequences of SCI. Persons with SCI (or TBI, stroke, or multiple sclerosis, among others) who answer these questions honestly can produce profiles suggesting psychological pathology where there is none.^140,253,359 Related measures such as the Symptom Checklist-90-Revised (SCL-90-R) are subject to similar skewing.⁴⁰¹

Although standardized testing is the foundation on which contemporary psychological assessment is built, there is considerable support in statements of professional organizations, test publishers, and experienced clinicians for “reasonable accommodations” in testing persons with disabilities.⁶⁵ The elderly, who are a rapidly expanding segment of the population, can also require special adaptations in assessment.⁶⁶ For example, the most recent edition of the Wechsler Adult Intelligence Scale (WAIS-N)³⁹⁰ addresses these issues in a section on “suitability and fairness.” The “fairness” issue in particular is a long overdue concept in psychology.^128,144 While devoting most attention to modifications for persons with hearing impairment, the WAIS-IV manual warns evaluators against “attribut(ing) low performance on a cognitive test to low intellectual ability when, in fact, it may be related to physical, language, or sensory difficulties.”³⁹⁰ Alterations or accommodations in the testing procedures should be recorded and taken into account in interpreting the test data. While it is recognized that “some modifications invalidate the use of norms, such testing of limits often provides very valuable qualitative and quantitative information.”³⁹⁰

What else can the psychologist do in such situations to ensure fair, accurate, and informative assessment? One method involves “pruning” of those items on measures designed to assess personality or emotional state that are perceived to be irrelevant to the constructs being assessed. Gass¹⁴¹ identified 14 potentially confounding items that, once the presence of brain injury has been established, can be removed and the protocol rescored to yield a “purified” profile. Gass¹⁴⁰ also identified 21 “stroke symptoms” that can be handled in the same manner. Woessner and Caplan^401,402 used expert consensus to determine that 14 and 19 items, respectively, from the SCL-90-R concerned phenomena that were part of the “natural history” of TBI or stroke. They argued that scores indicating pathology in physically healthy people could hold very different diagnostic significance for persons with acute or chronic medical conditions. Failure to attend to possible scale distortions could lead to misinterpretation, erroneous diagnosis, and subsequent misguided treatment.

Some authors^49,106 have argued against this method, maintaining that important information might be lost if items are deleted from standard measures, or that the psychometric properties of the instrument could be significantly altered. These authors based their position on studies of individuals in litigation, however, where validity is a pervasive concern. Stein et al.³⁵¹ offer a nuanced discussion of the pros and cons of retaining or eliminating “somatic items” in assessment of stroke survivors, pointing out that while these might represent a clinical problem, their mere presence offers no clue to etiology and, therefore, to treatment. The rehabilitation psychologist must analyze these symptoms in light of all available information to determine whether a psychologically treatable problem exists.

In the case of neuropsychological measures, greater ingenuity (and caution) is required to ensure that valid information is obtained from test administration. Although one naturally wants to know the impact of the disabling condition on the individual’s functioning, one does not want to consume time and energy simply to confirm the obvious. It is poor practice to administer a 60-item test of visual processing only to discover that the patient saw only part of the stimulus display because of a neurologically based deficit in attention to and awareness of one side of space (unilateral neglect). Possible strategies range from simply allowing extra time for those with psychomotor slowing or impaired manual dexterity, to actually modifying test materials themselves. Berninger et al.²⁸ adapted certain subtests of the Wechsler Adult Intelligence Scale–Revised for use with persons with speech or motor disabilities. They created multiple-choice alternatives for verbal measures (allowing participants to point to their chosen answer), enlarged visual stimuli, and used materials adapted with Velcro to reduce the impact of motor impairment when manual manipulation is required. Caplan⁶⁰ created a “midline” version of the Raven Coloured Progressive Matrices, a multiple-choice, “fill-in-the-blank” test of visual analysis and reasoning. Response alternatives are arrayed in a single column instead of rows, eliminating the lateral scanning component that limits the performance of patients with unilateral neglect. Patients with neglect performed significantly better on “midline” items than the standard ones, while those without neglect performed equally well on both types of item.

Not all authors support this approach. Lee et al.²¹⁴ cautioned that even minor deviations from standard procedures can produce “significant alterations” in performance. We view this as part of the challenge in practicing what is still the “art” of assessment, an endeavor with a substantial scientific base but one that does not mandate robotic behavior on the part of the examiner.

Factors Affecting Validity

Neuropsychological test findings are considered valid when they accurately reflect the patient’s underlying cognitive abilities. In addition to the potential distortions caused by sensory-motor limitations and medical symptoms discussed above, two other factors that can compromise test validity are practice effects and patient effort.

Interpretation of serial neuropsychological assessments, conducted to monitor functioning over time or determine the efficacy of interventions, can be clouded by practice effects—that is, improvements in test scores resulting from familiarity with the test (or even with the process of testing) rather than real gains in cognitive functioning. Research has indicated that some tests are more susceptible to practice effects, such as those evaluating memory.²⁴² Rehabilitation psychologists take several steps to minimize the impact of practice effects. First, comprehensive retesting evaluations are generally scheduled at sufficiently lengthy intervals (e.g., at least 6 months) to reduce the likelihood that patients can remember the test content. Alternative test forms with different test stimuli can also be used. This is especially important when the retest interval is brief. For example, comparable sets of words can be used for list-learning tasks (e.g., Hopkins Verbal Learning Test–Revised).⁴⁴ There is also growing documentation of the utility of statistical corrections, such as the Reliable Change Index¹⁸¹ and regression-based models³⁶⁰ to determine whether genuine and clinically relevant change has occurred on repeat testing.¹⁶⁷

Although the importance of assessment of patient effort has been recognized for some time,²⁸² there has been an avalanche of reports on “symptom validity” testing during the past decade, in large part because of the increased use of neuropsychological findings in forensic settings.^37,212 Although poor patient effort has been estimated to occur in 15% to 30% of forensic evaluations, the likely frequency in clinical settings remains relatively low at 8%.^260,313 Current standards of practice propose that assessment of symptom validity is a necessary part of all evaluations, although the procedures can vary in different settings.⁵¹ Several aspects of patients’ presentations can be examined for indications of poor or variable effort, including variability of performances across tests measuring similar abilities, and consistency between presenting medical factors (e.g., lesion locus) and test performance. One can ask whether the data exhibit “neuropsychological coherence.” Indices of effort are embedded in some tests that are often standard components of neuropsychological evaluations.²⁵⁴ Measures that rely on normative comparisons or use a forced choice paradigm have also been specifically developed as tests of “motivational impairment.”^29,37,212

Psychological Issues in Rehabilitation Settings

Despite rehabilitation’s historically medical emphasis, multiple psychological factors affect both the rehabilitation process and ultimate outcome. Certain psychological conditions also put persons at greater risk for injuries, affecting the psychological mix of the rehabilitation population. People with primary psychiatric disorders are not immune from injuries or serious medical events that necessitate rehabilitation, and their responses to disability can warrant special consideration.

Measurement of Psychological Status

In inpatient settings, assessment of emotional state is typically accomplished through a clinical interview and perhaps brief inventories. Fatigue, pain, cognitive problems, and medications can all affect patients’ ability to participate in testing and the validity of the results.¹⁸⁵ Current symptoms and behaviors are evaluated in a clinical interview, with consideration of the patient’s psychological and behavioral health history, psychosocial functioning, recent medical event, and medications. Short questionnaires can also be used. Questionnaires with a “yes-no” format are preferable for persons who have cognitive impairment. Interpretation of the findings relies significantly on clinical judgment, because the overlap between psychological and medical symptoms, as well as lifestyle changes inadvertently imposed by the medical event, can be mistakenly interpreted as signs of psychological distress. Serial assessments can help factor out acute influences that might affect diagnostic impressions. Some commonly administered measures of emotional status are listed in Box 4-3.

In outpatient settings, patients might be more capable of completing lengthier measures assessing personality factors that affect response to treatment. Obtaining such measures is particularly important in cases involving litigation because the data can help clarify the effect of psychological factors on the patient’s symptom presentation. Several measures have been specifically developed for use in populations having medical disorders. These include the Millon Clinical Multiaxial Inventory–III (Millon),²⁵⁹ which measures emotional as well as personality disorders, and the Millon Behavioral Medicine Diagnostic (MBMD).²⁵⁸ The MBMD provides information about health habits, coping styles, psychiatric conditions, stress moderators, and factors that can affect patients’ response to medical interventions. For assessment of general personality and psychopathology, the MMPI-2⁵³ and the Personality Assessment Inventory²⁶⁴ are widely used. Because these two inventories have not been validated on rehabilitation populations, the applicability of standard norms is unclear. As noted earlier, profiles from certain rehabilitation populations might inaccurately suggest psychopathology.

Assessment of chemical use history is important in rehabilitation settings, given the high incidence of substance abuse in persons who have sustained traumatic injuries and the destructive impact continued misuse can have on persons with disabilities.³⁶ Brief screening questionnaires such as the CAGE (four items),¹¹⁸ the Alcohol Use Disorders Identification Test (AUDIT-C; three items), and variations of the Michigan Alcohol Screening Test (MAST) (e.g., Short MAST³³⁴) are valid for identifying alcohol use problems in medical settings.^40,273 These tests are in the public domain and can be easily incorporated into health screening (Box 4-4). Some efforts have been made to validate these measures with special groups, such as geriatric populations.²⁷³ Rapid screening tests for abuse of other substances have not yet been validated with medical populations, although research points to the potential utility of a modified MAST (MAST/Alcohol-Drug³⁹³). Consequently the identification of drug abuse might require interviews with the patient and family, with an awareness that they might be reluctant to acknowledge abuse, given the potential legal implications.

Emotional/Psychological Variables and Rehabilitation Outcomes

A growing body of evidence supports the need to address psychological issues as part of the entire rehabilitation plan. Depression has been linked to higher mortality,¹⁸⁷ slowed rehabilitation progress, less favorable functional outcome, and poorer psychosocial recovery.^317,377 Anxiety can result in avoidance behaviors—that is, “being unavailable” for therapy. Persons experiencing life-threatening events are also at risk for the development of posttraumatic stress disorder (PTSD). This disorder has been observed in 3% to 27% of persons after TBI¹⁷³ and 7% to 17% of those with SCI.^270,298 Preinjury alcohol abuse predicts poorer outcome in individuals sustaining traumatic injuries. It is associated with the development of emotional problems, difficulty integrating into vocational and social activities, a higher risk for reinjury,^82,189 and the development of pressure ulcers.¹¹⁵ These findings show the importance of psychological assessment and subsequent psychological interventions in improving patients’ outcomes.

Facilitating Awareness and Acceptance of Change

Clarifying the patient’s understanding of the physical and cognitive changes that have occurred and their implications for daily functioning can open a window into the patient’s internal world. Understanding the patient’s beliefs, expectations, and experiences (the “insider perspective”⁹¹) helps the psychologist and team make sense of the patient’s reactions and aids in selecting interventions that will “ring true” for the patient. Learning the patient’s emotional history, including characteristic coping styles and strengths, can yield insight into the patient’s likely emotional course in rehabilitation. It should be noted that the extent of distress experienced after an illness or injury is frequently better explained by coping capabilities than by the injury itself.⁸⁵ If there is a history of alcohol and drug misuse, targeted education and intervention might be needed, because substance abuse impedes rehabilitation recovery and restricts long-term outcome.³⁶

The psychological status of patients in inpatient settings evolves, often (but not always) in concert with their physical and medical conditions. Like the rest of the team, the psychologist must work swiftly, serially assessing the patient’s psychological condition, digesting this information, advising the team regarding the most effective ways to communicate with the patient, and working with the patient and family members to conceptualize the disability as a challenge to be handled rather than being an unmanageable, devastating event. In the inpatient phase, patients often begin building connections between their epistemologic systems and the occurrence of the event. The frequent question “Why me?” is the beginning of the process of finding meaning in the event.⁸⁸ Although expressions of anger toward “God” have been associated with poorer emotional adjustment²⁸³ and functional outcomes,¹²⁵ some patients express acceptance based on a perception that their condition is an expression of “God’s will.” Those in whom this notion leads to passivity can be reminded, however, that “the Lord helps those who help themselves.”

As previously discussed, depression and anxiety, as well as denial, are common and can interfere with successful rehabilitation outcomes, including progress toward acceptance of change. In inpatient settings, rehabilitation psychologists assist patients with mood and anxiety symptoms through a combination of brief psychotherapeutic interventions, referral for medication, and behavioral or environmental manipulations. Psychologists also work to understand how life experiences (e.g., patients’ familiarity with others who have had this condition) as well as cognitive processing limitations resulting from brain injury hinder patients’ development of awareness and their ability to move toward acceptance of change. Persons with unilateral neglect typically do not perceive that the information their brain is receiving is incomplete, patients with neurologically based anosognosia commonly fail to see the changes in their functioning, and individuals with severe memory impairments might not recall that they do not recall. These impairments are a fertile breeding ground for paranoid-type interpretations, as affected persons can construct elaborate and sometimes psychotic-sounding rationales for their experiences. In inpatient rehabilitation, with the medical event so fresh and these numerous additional influences, psychologists are faced with powerful emotional currents to navigate to promote participation and progress in rehabilitation.

Addressing Social and Environmental Factors

The patient’s “family” is an important target of intervention for inpatient rehabilitation. Like the patient, the family is also struggling to make sense of dramatically changed circumstances affecting family structure and processes.²⁸⁰ Family roles can shift, as others take over functions formerly fulfilled by the patient. Usually it is not known for some time whether these role shifts are temporary or permanent. Family pathology can surface when problems with communication, emotional support, and practical problem solving interfere with the family’s adaptation. Intervention is essential because the quality of family interactions with the patient makes a measurable difference in patient outcome. Stroke patients with families that are emotionally supportive and provide necessary practical help make better emotional and physical recoveries, regardless of the stroke severity²⁸⁵; this finding may apply to persons with other causes of disability as well.²⁸⁰

“Nontraditional” couples and families might face special challenges in medical rehabilitation. Research is largely lacking on specific challenges of persons with disabilities who are gay, lesbian, bisexual, or transgendered (GLBT),⁸¹ and in regard to their sexual experiences and sexual expression.¹³² Rehabilitation professionals know little about the specific psychosocial challenges of persons who are GLBT (e.g., homophobia, use of specific recreational drugs, spiritual issues, and sexuality),¹⁷² and these issues are unlikely to be adequately addressed in medical rehabilitation programs. In the past, state laws added additional barriers, and therapists often found themselves choosing between adherence to state laws regarding sexual practices (e.g., prohibiting sodomy) and serving the needs of GLBT patients with disabilities.¹³ Patients who are in gay or lesbian relationships who have not “come out” can find it difficult to get support from their partners without compromising the privacy that they have protected. Partners also face new challenges, including those related to proxy decision making.

“Normal” Crises

Many people enter rehabilitation fresh from a crisis. A child has sustained a brain injury. A husband has lost his arm in an industrial accident. A mother has had a stroke during childbirth. An elderly, robust life partner has lost his speech as a result of a stroke. The psychologist enters this domain of grief, anxiety, and denial with the goal of collaborating with the patient and family to craft a way of viewing this experience that will allow for hope. Without presenting statistics about the various prognostic options and insisting on data-driven reality, the psychologist creates a safety net for the pain and allows glimpses into possibilities.

A psychoeducational model involves describing possibilities for patients and families without directly challenging their experience and beliefs. This approach has the potential to invite change while raising little resistance. Kreutzer and Taylor²⁰⁷ have developed a manualized program for patients and families after TBI. In this program a brain injury is presented as a problem that can be managed like any other. Patients and families help define the changes that have occurred from the brain injury, and then are encouraged and helped to find ways to address them. This model provides definition and boundaries to the impact of the injury, encourages people to recognize continuities in their lives, and suggests that satisfying experiences can still occur. For persons with stroke and their families, a one-session psychoeducational intervention discussing coping, burnout, social and recreational activities, and other practical ways to manage stress has been developed, and the initial research has shown it to be effective.²⁸¹

Behavioral and Extraordinary Crises

Behavioral crises can be triggered by misperceptions arising from data skewed by cognitive impairment, denial, or other psychological processes. Psychological factors can also result in behavioral acting out when patients experience themselves as powerless, anxious, or threatened. These crises can include behaviors such as refusal to attend therapies, overuse of the call button, lewd comments, elopement, or physical aggression. Behavioral crises can also be more subtle, such as patients setting team members against each other by appealing to the staff’s natural instincts to be appreciated. A typical method is high praise of one team member coupled with criticism of another, which can interfere with the team’s sense of unity.

Extreme crises also occur in rehabilitation practice. Patients and families can face decisions about terminating ventilators, dialysis, or other extraordinary care, resulting in the patient’s death.⁵⁶ These situations typically spawn intense emotion in rehabilitation team members, who are torn by their own ethics, morals, and quality-of-life assessments. Team members often covertly vote on whether the patient and family are making the right decision, which can produce disruption in the team and send mixed messages to patients and families. In these situations, psychologists can identify and illuminate the factors pertinent to the decision and support the patient and family in their decision-making process, while simultaneously unifying the team and helping the team deal with its grief.

Preparing for Discharge

At the time of discharge, patients with TBI might still exhibit impaired self-awareness,^294,296 and they might still be denying the duration of the change, its significance, or both. Intervention is needed if diminished awareness of one’s limitations jeopardizes safety or implementation of rehabilitation recommendations.

When considering the need for intervention, it is important to distinguish between verbal and behavioral denial. If patients act as if they have experienced a disabling event (e.g., participate in therapies, follow recommendations for assistance), it matters little how they describe their conditions. When denial carries over into their actions, however, refusing therapies (saying that nothing is wrong with them or that the problem will go away), this “behavioral denial” becomes problematic. In such cases, providing objective, structured feedback or having patients participate in ecologically valid tasks that elicit their deficits might increase self-awareness.⁷⁰

Rehabilitation psychologists work with patients and family members as they cope with the ambivalence that can be triggered by discharge from the inpatient setting. Eager though they might be able to go home, the fact they are preparing for discharge with a disability communicates that their functional changes will not quickly resolve. It is often productive to encourage a focus on the near future, with the message that plans and decisions must be made on the basis of current functioning. Further recovery can be hoped for but not counted on. In this way the psychologist teaches the important distinction between “hope” and “expectation.”⁶³ Apprehension regarding discharge is also eased by a reminder that improvement does not necessarily terminate when one leaves the hospital. Patients can be reassured that there comes a point when outpatient therapy or a home program can be as productive as inpatient treatment, and the psychological benefits of being in one’s familiar surroundings cannot be minimized.

Addressing Family and Caregiver Issues

Family structure and family roles (e.g., communication, emotional support, problem solving) are disrupted by disabling events.²⁸⁰ Caregivers can be at particular risk for distress, especially those caring for persons having problems with memory and comprehension that often follow brain injury or stroke.⁵⁸ There is evidence, however, that caregiver resentment is diminished when problem behaviors are attributed to the illness rather than the person,³⁹⁵ as when the cause is seen as the “brain injury,” not the “difficult husband.” Factors such as family role, access to social support, and caregiver social problem-solving skills all modulate the emotional impact of caregiving.¹⁵⁵

Patients’ recoveries are affected, in turn, by their families’ behaviors. For example, one study of stroke patients showed better functional and emotional recovery among patients whose families were emotionally supportive and provided appropriate levels of practical assistance.²⁸⁰

Scope of Care

Rehabilitation psychologists in outpatient practice are often called on to identify and treat a range of psychological issues. Cases that might initially be conceptualized as “adjustment disorders” (anxiety or depression after a loss) might over time become highly complex because of prior experiences and/or preexisting factors such as child sexual abuse,²²⁸ borderline personality disorder,¹⁵³ antisocial or obsessive-compulsive personality disorders,¹⁷¹ and substance abuse. As noted above, PTSD related to the injury is not uncommon after TBI¹⁷³ or SCI.^270,298 A brain injury might also precipitate reemergence of previously resolved PTSD symptoms.³⁰²

Just as many former rehabilitation patients require lifetime medical monitoring, their chronic cognitive, psychosocial, vocational, and behavioral problems can merit psychological consultation, intervention, or both, at any point after discharge. For example, persons with TBI can have chronic cognitive problems,¹⁰⁴ especially with processing speed, memory, and executive functioning. These cognitive deficits, coupled with difficulties adjusting to postinjury life, can cause lowered self-confidence, relationship failures, and problems managing negative affect.¹⁷¹ These individuals might benefit from rehabilitation psychology consultation as they grapple with changed psychosocial circumstances. Persons with other disabling conditions might also benefit from seeking consultation with psychologists as they encounter new life challenges.³⁸⁵

General Principles of Psychotherapy

Psychotherapy is a method for assisting clients to understand their emotional and behavioral reactions, and create the potential to act from a position of choice, rather than from reflexive responding. The various types of interventions are useful for structuring the psychotherapist’s thinking, observations, and choice of how to respond. The intervention helps the psychotherapist organize a complex set of data in patterns, so that the therapist will know how to understand the material that the client is bringing, and how to formulate a response to move towards the treatment goals. The form of therapy is selected according to the clinical question and, whenever possible, the preferences of the patient. Psychologists also remain mindful that a key “active ingredient” in psychotherapy is the therapeutic alliance²³⁵; therapists who are perceived as likable, compassionate, and empathic tend to achieve good outcomes.

Like all areas of health care, psychology is moving toward data-driven treatments. Rehabilitation psychology faces several challenges in doing so: (1) measuring the relationship, (2) measuring the intervention, and (3) translating research to clinical practice. Measuring the relationship is critical, given that a consistently potent factor in psychotherapy is the alliance that exists between the patient and the therapist.²³⁵ As this is an interactional variable (i.e., it involves both the therapist and the patient), it is impossible to predict in advance whether a particular therapist will have a good working relationship with a particular patient. We also do not have tools to measure whether a “good-enough” working relationship exists between patient A and therapist B, nor do we know whether incremental benefit accrues from an “excellent” relationship as compared with a “good” relationship. With regards to measuring the intervention, some interventions (e.g., behavioral and cognitive-behavioral treatments) suit themselves to manualized treatments, while others (e.g., existential) are much more fluid and harder to operationalize. Rehabilitation interventions might also need to be modified to suit the capacities and characteristics of the patients, and can depart from the form used in establishing efficacy. The final challenge is in translating research to clinical practice. Persons who have disabilities face a wider range of psychosocial issues, identity issues, and psychosocial challenges than the average person participating in a psychotherapy efficacy study, raising questions about the applicability of findings from these clinical trials to rehabilitation populations.^357,366

Interventions Targeting Behaviors and Thoughts

Most psychological problems present with observable symptoms. A patient might isolate herself, a patient might refuse to attend therapy, or a patient might use the call bell incessantly and complain about inattentive staff. A patient might observe that “nothing” is getting better, or indicate that “no one” wants to date someone who uses a wheelchair. Some psychological interventions focus directly on changing these behaviors, with lesser consideration to the history of the problem or the patient’s opinion about why the problem exists. Interventions predominantly targeting the behavioral symptoms and thoughts include psychoeducation, skills training, motivational interviewing, behavior modification, and cognitive behavioral therapy.

Interventions Targeting Meaning

Certain psychological interventions focus on identifying key motivational factors behind actions. In clarifying these motivations, the patient experiences more freedom and choice, and also develops a richer and more coherent personal story.

Therapies Targeting the Context

Sometimes called the “third wave” of cognitive and behavioral therapies, the following therapies focus on the experiences of individuals, their awareness of the present, and the context in which they experience their symptoms. These therapies do not exclude use of previous processes, but add the element of acceptance. These therapies can be particularly useful in situations in which persons are dealing with chronic conditions.

History of Cognitive Rehabilitation

One could reasonably trace the origin of CR to the 1800s and Broca’s endeavors to improve language functioning of persons with aphasia. After an extended quiescent period, eminent figures such as Goldstein,¹⁴⁹ Luria,²²³ Zangwill,^413,414 and Wepman³⁹² developed rehabilitation programs for injured soldiers, deriving tactics from their research findings and models of brain functioning. These programs included a focus on vocational restoration, the sort of “ecologic emphasis” valued by contemporary practitioners. All viewed detailed neuropsychological assessment as a necessary first step in clarifying the nature and extent of impairments to be addressed.³¹

These midcentury efforts inspired little further development until the 1970s, when Ben-Yishay and colleagues²⁷ at the Rusk Institute of Rehabilitation Medicine, rowing against the prevailing tide of “therapeutic nihilism” (i.e., the view that higher cortical deficits were largely untreatable), devised interventions aimed at specific deficits such as unilateral neglect and constructional impairment. Their methods tended to be what Mateer and Raskin²³⁹ described as “direct interventions,” and Kennedy and Turkstra¹⁹⁶ called the “train and hope” variety. They were based on the premise that repetitive drill on a discrete function (e.g., visual scanning in cases of neglect) would ameliorate the degree of deficit and also result in improvements in daily life functions dependent on that skill. Meier et al.²⁴⁷ described work based on this perspective, revealing that some success was achieved with this narrowly focused training. For example, patients with unilateral neglect who underwent visual scanning training showed improvements in reading, and those who received training in constructing block designs exhibited improvement in eating behavior (although the connection between the trained skill and the improved function was admittedly tenuous).

Also during the 1970s, Ben-Yishay developed many techniques for treatment of TBI-related deficits in his holistic day treatment program created for Israeli soldiers wounded during the 1973 Yom Kippur War. Developments in CR continued during the 1980s, and the use of computers assumed considerable importance. Clinicians incorporated games such as Pong in attempts to improve sustained attention, capitalizing on the precise control conferred over delivery of training activities and the computers’ capacity to keep track of patient performance.²²³

As more practitioners entered the CR field, the value of theory-based interventions came to be widely accepted. This development was supported by the emergence of “cognitive neuropsychology,” which featured exquisitely detailed case studies and frequent use of ad hoc testing methods to illuminate the nature of unusual deficits. Its practitioners typically based their work on current theories of neuropsychological functioning in domains such as attention, memory, and executive function. The work of Coltheart et al.^76,77 provides a good overview of this perspective, and the case study of a deep dyslexic patient reported by dePartz⁹⁴ offers a detailed illustration of the derivation of effective treatment strategies from a well-articulated theory of the deficit. Wilson’s volume³⁹⁷ consists of an accessible series of CR case reports, some of which are theoretically based.

A well-known conceptualization of approaches used in CR was offered by Cicerone et al.,⁷² wherein emphasis was placed on the functional orientation of several strategies, including strengthening or reestablishing previously learned patterns of behavior; establishing new patterns of cognitive activity through compensatory mechanisms (either via neurologic systems or external compensatory mechanisms); and promoting adaption to one’s cognitive disability to improve overall functioning and quality of life. By this definition, CR can target all three levels of functional compromise encompassed by the World Health Organization’s International Classification of Function.⁴⁰⁵

A detailed enumeration of the multiple potentially efficacious approaches used in CR was offered by Eskes and Barrett.¹¹⁷ They highlighted the following specific CR strategies: (1) retraining of the impaired function; (2) optimization of preserved functions; (3) compensation through substitution of intact skills; (4) utilization of environmental supports or devices to compensate for impaired functions; and (5) training via “vicariation approaches” (which try to recruit related intact brain regions to assume responsibility for functions previously carried out by damaged areas).

The Future of Cognitive Rehabilitation Interventions

Despite its relatively brief contemporary history, the field of CR has undergone several paradigm shifts. While early CR strategies tended to emphasize direct training or use of compensatory functions (as in right hemisphere “takeover” of language after left hemisphere damage²⁰⁰), the most exciting and encouraging recent developments have centered around technologically based methods. As computers have become smaller and more powerful, clinicians have identified new ways to put them to use. For example, DePompei et al.⁹⁵ reported on 106 subjects (ages 6 to 66 years) with various “memory and organizational problems” who were taught to use personal digital assistants and “smartphones.”

Another promising development in CR involves applications of virtual reality (VR) technology. With VR, clinicians can create situations that closely resemble those in the real world (adjusting parameters as needed). This allows patients to practice new strategies in “virtual versions” of settings to which they will return, receive feedback about their performance, and grow acclimated to strategy use (while knowing that the world they are dealing with is only a “virtual” one). Matheis et al.²⁴⁰ described a VR presentation of a visual learning task to persons with TBI and controls. The authors argued that this approach allows a closer approximation of likely real-life performance than would conventional neuropsychological tests of memory. Schultheis and Rizzo³³² offered a valuable overview of VR-based CR for several types of higher cortical deficits and for rehearsing a number of daily life tasks such as cooking and driving.

For persons with memory impairment, a logical and effective intervention is provision of cues to carry out particular actions. A seemingly natural strategy, then, would appear to be having patients write down information (e.g., shopping lists, appointments, birthdays) that they want to remember. Advocates of “memory books” often found that this treatment failed, however, because patients did not “remember to remember” to check their books. Consistent with this, in the study described above, DePompei et al⁹⁵ found personal digital assistants and smartphones (which use cuing alarms) to be effective, but the use of a daily planner (which is commonly recommended as a memory aid) had a negative impact. The advent of personal pagers offers another partial solution to this problem: programmed reminders can be sent to patients’ pagers from a central location (such as the doctor’s office) to prompt them to check their book to see what their next destination should be. Wilson et al.³⁹⁹ reported the case of a severely memory-impaired young man who was able to live independently with the help of such a device, called a Neuropage. A review of recent applications of assistive technology to ameliorate the effects of cognitive deficits is available.²⁰²

Considerations Regarding Cognitive Rehabilitation Efficacy

In attempting to evaluate the efficacy of CR techniques, an issue has arisen concerning the definition of “recovery.” Caplan⁵⁹ posed the question this way: “Does the performance of a behavioral act via neural pathways other than those that were premorbidly in control constitute recovery of function? Has a patient with unilateral neglect recovered on having learned to turn his head in compensatory fashion, or does ‘recovery’ require the return of premorbid ocular movements? Another way of asking this question is: Does ‘function’ equal the process or its consummation?” Rohling et al.³¹⁵ recently called attention to the critical difference between “recovery of cognitive function and learning compensatory strategies for coping with chronic cognitive deficits.” They noted Wilson’s³⁹⁸ conclusion that rehabilitation of memory impairments per se tended to be ineffective, but that the evidence did support the efficacy of intervention for performance of daily tasks that require remembering. However, if one accepts the definition of CR by Cicerone et al.,⁷² (which is based on outcome rather than process), this question becomes moot, because all types of “recovery” are captured therein.

Another matter of current contention involves the evidentiary value of single case studies versus randomized controlled trials (RCTs). While Rohling et al.³¹⁵ urge increased reliance on RCTs, noting their greater internal validity, a contrasting view was taken by Mateer,²³⁸ who argued the case for single-subject designs. She noted several factors that hamper the conduct of true RCTs in rehabilitation, with difficulty of random assignment and patient heterogeneity being the most substantial. Making a related point, Hart et al.¹⁶⁴ have referred to the “dilemma of the control condition” in such studies. Highlighting the benefit of single-subject designs to the field of CR, Mateer comments favorably on the case report of Svoboda and Richards³⁵⁵ describing a 55-year-old woman with severe anterograde amnesia who, via a theory-driven program, learned to use a smartphone to assist with the performance of multiple daily life tasks. Interestingly, the patient exhibited generalization of learned skills across untrained situations demanding memory function, an outcome all too rarely reported.

What evidence do we have that CR is effective? A task force of the Brain Injury Special Interest Group of the American Congress of Rehabilitation Medicine has published two reviews of the literature, resulting in recommendations for clinical practice. The first publication⁷¹ reviewed 171 studies (most being class III—clinical series with no controls or single case studies) and found support for the efficacy of CR for persons who exhibit language deficits after left hemisphere stroke or perceptual deficits after right hemisphere stroke, and for those with TBI who have impaired attention, memory, functional communication, and executive function. In 2005 Cicerone et al.⁷² offered an updated review, largely confirming their initial findings and also demonstrating support for training in cases of apraxia. These authors urged further studies comparing different treatments for particular deficits, and also looking at the impact of remediation on performance at the level of social functioning (not just “impairment”). The findings of Cicerone et al. were also supported by Eskes and Barrett’s 2009 review.¹¹⁷ Other matters requiring additional investigation and analysis are questions of timing, intensity of treatment, and optimal duration.¹⁶

Psychosocial Functioning

Many childhood disabilities are associated with impairments and activity limitations that can hamper emotional adjustment and social engagement. Children’s reactions to these limitations often manifest as behavioral difficulties such as “acting out” in the classroom or at home. Abnormalities in emotional, behavioral, and social functioning can also be a direct result of the underlying condition, especially those that affect neurologic status. Because psychological factors can influence overall functioning, careful examination of psychosocial issues is essential when evaluating children with disabilities who are at risk for emotional, behavioral, and/ or social difficulties. Identifying these possible problems and educating the treating team about them is a key role of the pediatric rehabilitation psychologist.

Several standardized, multidimensional rating scales of emotional, behavioral, and/or social functioning can be administered to the child’s caregivers and teachers to obtain collateral information about the child’s functioning. The Child Behavior Checklist–Second Edition (CBCL-II)¹ and the Behavior Assessment System for Children–Second Edition (BASC-2)³⁰⁷ are rating scales that survey a variety of common emotional, behavioral, and social concerns in children. Because the child can present quite differently from one setting to another (based in part on the available supports within a particular environment), a reliable and accurate psychological diagnosis is enhanced if one obtains information about the child’s psychosocial functioning from multiple sources, including caregivers, teachers, and when appropriate, the child. As is the case with many neuropsychological and psychological measures, while the CBCL-II and BASC-2 are psychometrically sound when used with typically developing and emotionally or behaviorally disturbed children, they must be interpreted cautiously when used with caregivers and teachers of children with significant physical or cognitive disabilities, or both. Some of the item content might not be appropriate for these children. Other measures are available to examine specific behavioral phenomena that can reflect cognitive limitations, such as attention (e.g., Conners’ Ratings Scale⁸⁰) and executive functioning (e.g., Behavior Rating Inventory of Executive Functioning¹⁴⁵).

Another window into a child’s psychosocial functioning is through direct interview or report from the child. Paralleling the caregiver and teacher versions, the BASC-2 has a self-report measure of personality for children 8 years and older.³⁰⁷ There are also a number of self-report measures of mood, such as the Children’s Depression Inventory²⁰⁶ and the Revised Children’s Manifest Anxiety Scale.³⁰⁸ Self-report measures of coping skills, as well as cognitive appraisals (such as perceived control, illness uncertainty, and illness intrusiveness), can also be helpful in identifying at-risk children and planning treatment.³⁸³ While potentially informative, however, self-report measures from children are subject to several limitations. These include the child’s ability to self-monitor and accurately report emotional functioning, and the possibility of underreporting of difficulties because of social desirability influences.⁴¹⁵ Self-report methods might also simply not be valid for children with significant cognitive impairments, regardless of age.

Behavioral assessment and more systematic functional analysis are also useful in identifying problem or target behaviors, determining possible causes, and selecting reasonable treatment strategies.²³⁶ Information gleaned from these techniques allows for proper management of the child’s environment and implementation of contingencies to diminish undesirable behavior and maximize target behavior. Behavioral assessment involves specifying the to-be-extinguished target behavior, determining the antecedents (what precedes the inappropriate behavior), and identifying the consequence for the inappropriate behavior. For example, a pediatric rehabilitation psychologist might be asked to help understand why a child is putting his head down and disengaging in physical therapy. Through observation the psychologist might determine the antecedent (the child puts his head down whenever the therapy area is noisy and crowded) and the consequence (the therapist schedules the child at off hours). The psychologist can use this information to develop a plan to help reduce the likelihood that the undesired behavior will be inadvertently reinforced by the therapist.

Intellectual Ability

Intelligence refers to the general reasoning ability, problem solving, and the capacity to acquire knowledge.³²⁶ An IQ is a standardized score based on mean performance and variability across multiple subtests. IQ test scores are usually converted to standard scores (mean = 100, standard deviation = 15). A standard score of approximately 70 or below is regarded as indicative of limited intellectual functioning. Two common intelligence or IQ tests for children include the Wechsler Intelligence Scale for Children, Fourth Edition,³⁸⁹ and the Stanford-Binet, Fifth Edition.³¹⁶

Assessment of intellectual functioning using a standardized IQ test is essential if intellectual disability is suspected. Intellectual disability, also termed mental retardation, is characterized by significant limitations both in intellectual functioning and in adaptive behavior that originate before 18 years of age (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition [DSM-IV]⁷). Although mental retardation and intellectual disability are now used synonymously, the latter is becoming the preferred term. For example, the American Association of Mental Retardation changed its name in 2007 to the American Association on Intellectual and Developmental Disabilities.⁴

To diagnose an intellectual disability, a rehabilitation psychologist also assesses adaptive functioning (DSM-IV⁷), for which standardized tests (e.g., Vineland Adaptive Behavior Scales³⁵²) also exist. Although there are several definitions of adaptive functioning, the American Association on Intellectual and Developmental Disabilities defines adaptive functioning as comprising three skill types^4:

Limitations in behavioral, sensory, and motor abilities, as well as cultural factors, are considered when determining whether intellectual disability exists in a given instance. Assessment of intellectual disability in children with significant physical disabilities can be particularly challenging because deficits on standardized testing of cognitive and adaptive functioning might be the consequences of motor or sensory impairment rather than cognitive impairment.²⁸ Several authors have offered suggestions as to how best to assess these special populations of children.^227,377 Cultural factors can also have an impact on test performance and level of adaptive functioning.³²⁶ For example, in some cultures, children with disabilities are not expected to attend school or perform any self-care activities, even if they are able to do so.¹⁶³ These limitations of exposure and practice can result in underestimates of the child’s true abilities.

Neuropsychological Testing

Neuropsychological assessment of children involves understanding of brain-behavior relations and how these relations are influenced by the developing brain.^121,227 In children with neurodevelopmental disabilities or acquired neurologic impairments, pediatric rehabilitation psychologists evaluate the full range of neuropsychological domains, with a view to developing a profile of required supports that is more comprehensive and informative than one based on IQ scores alone. This is particularly important because children with certain conditions, such as acquired brain injuries, often have significant neuropsychological deficits (e.g., impairments in processing speed, memory, and executive functioning) but average IQ scores.¹⁰³

Neuropsychological assessment can also be indicated for children with primarily physical disabilities who demonstrate difficulty learning at school or acquiring self-care skills. These children often benefit from neuropsychological testing to help sort out the barriers to learning. As in the general population of children, there is a subgroup of children with physical disabilities (e.g., amputees) with learning disabilities or attention deficit–hyperactivity disorder. As children with physical disabilities and chronic health conditions mature, independence in self-care is also often a goal. These skills require a high level of organization, planning, and problem solving (i.e., executive functioning), so even minor dysfunction can greatly limit development of independence with self-care skills.²²⁶

Other Considerations

Pediatric rehabilitation psychologists conceptualize and interpret assessment results with knowledge of the child’s environmental demands and supports in the home, school, and community environments. Many children with disabilities will be receiving therapies and interventions before assessment by the pediatric rehabilitation psychologist. It is essential to understand what therapies and interventions have been implemented, as well as how successful those supports and interventions have been, to make suitable additional recommendations.²²⁷

The pediatric rehabilitation psychologist might also need to assist in planning for the future, based on an understanding of the child’s prognosis and expected changes in environmental demands.²²⁷ For example, the intervention plan for a 6-year-old child with executive dysfunction is very different than the plan for a 15-year-old adolescent. It can be particularly helpful to provide families with some general guidance of how to manage critical time points (such as transitions from elementary to middle to high school). The child’s changing needs might dictate regular returns to a multidisciplinary clinic for serial evaluation by professionals sensitive to the developmental arc, and who are capable of identifying any new needs for supports or treatment. Follow-up psychological or neuropsychological evaluation might be recommended at a specific point in time, based on the predicted future concerns.

Behavior Management and Environment Control

In pediatric rehabilitation psychology, especially when working with children with cognitive deficits, implementing environmental and behavioral intervention techniques often involves teaching all significant individuals in the child’s life to maintain structure and routine during daily functional activities. This permits better control of behavior. As the child functions more independently, these controls can be reduced.⁴⁰⁸ Teachers and caregivers are taught by rehabilitation professionals how to follow through with environmental modifications and behavioral management strategies within the child’s everyday life.

After using behavioral assessment or more systematic functional analysis to identify adaptive and maladaptive behavior patterns, pediatric rehabilitation psychologists implement specific behavioral management strategies, such as operant contingency management, antecedent control, and combinations of these approaches in the home and school environment. Operant contingency management uses contingencies to change the probability that the child will display a certain behavior. Two common contingences that increase the frequency of a target behavior are positive reinforcers (events or activities that increase the likelihood of a desired behavior when presented after the behavior) and negative reinforcers (events or activities that increase the likelihood of a desired behavior when removed after the behavior).²³⁶ A common positive reinforcer is praising the child for trying a novel activity in therapy. A negative reinforcer could involve removing a child from a noisy therapy gym after the child completes a desired activity. Antecedent management involves proactive modification of the environment to prevent or minimize the occurrence of an undesirable behavior and increase the probability of desirable behavior.

A recently developed technique, positive behavioral interventions and supports (PBIS), combines operant conditioning and antecedent management.^195,325 Like antecedent management, PBIS is designed to be proactive. The goal is to prevent problem behavior by altering a situation before escalation occurs, while at the same time teaching and reinforcing acceptable alternative behaviors. PBIS is ideally suited for the school setting, and in recent years has been used as a school-wide prevention programin more than 7500 schools nationwide. Its main use has been to reduce disruptive behavior problems in the general student population⁴² and to enhance school-wide health.⁴¹ PBIS has also been used to promote desirable behavior in children with acquired brain injuries in the school environment, although research demonstrating efficacy is limited.^339,409 Given the promising results in the school system and with children with neurologic injury, PBIS might work well in structured group settings designed for rehabilitation, such as an inpatient rehabilitation unit or day hospital program.

Family Therapy, Support, and Education

As noted above, childhood disability can result in substantial family stress and burden. Factors such as family resources and family conflict are also associated with functional outcome in children. A key goal for pediatric rehabilitation psychologists is developing supportive and instructive interventions that help families by reducing caregiver stress and burden, improving management of child behavior problems, and reducing family conflict.

Multiple well-designed intervention studies of families of children with TBI provide strong support for educating, involving, and working with the family to ameliorate cognitive and behavioral problems in these children. For instance, educational intervention in the emergency department (i.e., providing general information about common symptoms and course of recovery) with families of children who sustained mild TBI was associated with better outcomes 3 months after injury relative to children who received routine care.²⁹¹ In a randomized controlled intervention, Braga et al.⁴³ also found significantly improved functional skills in children whose relatives were taught to implement CR in the home environment, as compared with children who received typical outpatient therapy.

A series of studies examining family therapy for families of children with TBI found that psychotherapeutic techniques, including problem-solving strategy training, improved child behavior and decreased parental distress.^379,382 In addition, a similar family therapy model, termed behavioral family systems therapy, reduced family conflict in families of children with diabetes.^9,406 Recently, Cole et al.⁷⁴ outlined seven clinical guidelines for therapy with families of children with brain injury (Box 4-6). While these guidelines were developed with families of children with TBI in mind, they are applicable to families of children with a wide range of disabilities.

Cognitive Rehabilitation

Cognitive deficits are frequent consequences of neurodevelopmental and acquired neurologic conditions and often warrant intervention. While a handful of well-designed studies demonstrate the efficacy of outpatient CR aimed at difficulties with attention and memory,^53,54,376 for most children with neurologic conditions, cognitive interventions are implemented by teachers and therapists working in the school system as part of the child’s educational program. Parents and other caregivers play an essential role in structuring the child’s environment in a manner that promotes optimal functioning. The interventions implemented by people in the child’s everyday environment are considered within the broad definition of CR for children. While specific techniques for providing intervention in the child’s daily environment have been detailed,⁴⁰⁸ well-designed studies are still needed to examine the efficacy of these interventions.³⁴¹

Developmental issues are particularly challenging in the study of CR for children, because age at both injury and at the time of intervention can influence treatment efficacy. For example, younger age at injury has been associated with greater cognitive impairment after TBI.^92,340 Effective interventions for children with cognitive deficits also vary depending on the age of the child, as an intervention that is effective for a school-aged child might not be effective for an adolescent.²²⁷