Rehabilitation Psychology
February 2001 Vol. 46, No. 1, 82-99
© 2001 by the American Psychological Association
For personal use only--not for distribution.
Social and Institutional Factors in Adjustment to Traumatic Brain
Injury
Debjani Mukherjee
Department of Psychology, University of Illinois at Urbana-Champaign
Carle Clinic Association
Wendy Heller
Department of Psychology, University of Illinois at Urbana-Champaign
Joseph S. Alper
Department of Psychology, University of Illinois at Urbana-Champaign
Carle Clinic Association
ABSTRACT
ABSTRACT. A longitudinal case study of a working-class heterosexual White man
who sustained a traumatic brain injury in a motor vehicle accident is used to delineate
social and institutional factors that play a role in adjustment to brain injury. Data
gathered from multiple sources (e.g., medical records, neuropsychological
assessment, participant observation, and interviews) and sustained contact with the
participant and his family over a 10-month time span reveal a complex and
multidetermined view of the adjustment process. The case illustrates the critical need
for an advocate, a requirement that becomes particularly acute when cognitive
disabilities interfere with a person's ability to function effectively on his or her own.
The factors that people with brain injuries and advocates must face include shifting of
responsibilities, time, paperwork, negotiation of finances, and issues related to class
and disability status. Moving beyond the individual focus on deficits and impairments
to looking at the institutional, social, and cultural factors that influence the adjustment
process will give clinicians and researchers a broader context for understanding brain
injury and helping patients adjust.
Approximately 5.3 million American children and adults (a little more than 2% of
the U.S. population) currently live with disabilities resulting from traumatic brain
injury (TBI; Testimony of Allan I. Bergman, 1999). Common areas of difficulty
include activities of daily living (e.g., problems with using public transportation),
cognitive functioning (e.g., language and communication problems), emotional
functioning (e.g., anxiety and depression), physical problems (e.g., fatigue), preinjury
factors (e.g., cultural and class barriers), impaired sense of self (e.g., unawareness of
deficits), and social functioning (e.g., loss of power and control; see, e.g., Corrigan,
Smith-Knapp, & Granger, 1998; Lezak, 1995). Despite the magnitude of the problem,
the gap between the number of adults with TBI-related disabilities and the number
receiving long-term services is enormous (U.S. General Accounting Office, 1998).
Although many large-scale research projects have been funded and undertaken, the
reasons for the disparity between those needing and those receiving services remain
unclear. A recent U.S. General Accounting Office (1998) report that evaluated
postacute services for individuals with TBI suggested that two major factors limiting
access to services are the existence of a cognitive impairment in the absence of a
physical disability and the lack of an effective advocate to negotiate the social service
system. These data suggest that the majority of previous research, which has focused
on individual factors couched in terms of deficits and impairments, may have
overlooked the importance of the social and cultural climate in which the brain injury
is experienced and the adjustment process occurs.
In this article, we use an exemplar case of a working-class heterosexual White man
who sustained a TBI in a motor vehicle accident to delineate social and institutional
factors that play a role in adjustment to brain injury. Although the current research is
within the domain of the case study tradition, it differs from most clinical reports in
that the research was framed and approached from a cultural psychology perspective
(e.g., Cole, 1990; Shweder, 1990; Shweder & Sullivan, 1993). Cultural psychology
“is the study of the way cultural traditions and social practices regulate, express,
transform, and permute the human psyche” (Shweder, 1990, p. 1). Culture is viewed
as emergent, dynamic, and continually negotiated. Cultural psychologists are skeptical
about presupposed distinctions between individual and environment and assume that a
person and a system are interdependent and, in fact, that persons and systems are coconstructed. For a rehabilitation psychologist with a cultural psychology perspective,
this might mean that a patient's recovery has to be examined as a process (in addition
to gathering outcome variables such as return to work), that the interdependence of
person and culture has to be recognized and explicated (in addition to documenting
cognitive impairments caused by the brain injury), and that the perspectives of the
patient and family members have to be given voice and importance (in addition to the
perspectives of health care practitioners and legislators). In keeping with this
orientation, rehabilitation psychologists would not simply view culture as a variable
that must be accounted for but would examine the cultural contexts in which brain
injury is experienced.
The case discussed in this article is part of a larger study examining posthospital
recovery from brain injury. In this case, Debjani Mukherjee followed the patient for
10 months. She had contact with him and his family while he was in the intensive care
unit, was his psychometrist while he was an inpatient and outpatient, and assessed and
interviewed him and his sister several weeks after he was discharged and again 6
months later. She also interviewed his sister 2 months after the second research
session and had periodic telephone contact with her throughout the time period. She
interacted with the patient in four settings—intensive care unit, hospital unit,
neuropsychologist's office, and sister's home—although the most extensive contact
was in his sister's home (for a discussion about the importance of place, see Feld &
Basso, 1996). Quantitative (e.g., neuropsychological assessment measures) data were
gathered, and open-ended interviews were conducted (see the Appendix for the
measures administered). The participants were viewed as collaborators, and the
content of the interviews was in large part dictated by the areas that they
spontaneously brought up or elaborated on.
Although rehabilitation staff typically approach work with patients on a case-bycase basis and have sustained contact with them, research is typically conducted on
groups of patients assessed with forced-choice questionnaires and performance
measures. The present discussion of one patient, followed for a year and assessed at
different points in time using multiple methods, allows for an in-depth contextual
understanding of the complexities of negotiating the adjustment to brain injury and is
consistent with the ways in which rehabilitation is practiced if not typically
researched.
CASE STUDY
The Injury
Jim (all names are pseudonyms), a 43-year-old working-class heterosexual White
man with a 12th-grade education, was an unrestrained driver in a head-on automobile
collision. Before the accident, he had worked as a temporary machinist. He had lived
near his seven siblings and parents in a midwestern city but was on his way to Florida
with his girlfriend to “start over” when he had the accident. Brain trauma was evident
to emergency personnel, who observed some brain matter coming out of his nostrils.
Jim was intubated, and by the time he arrived at the trauma center he scored a 3 on the
Glasgow Coma Scale (Jennet & Bond, 1975), indicating a severe lack of response to
stimuli. Computed tomography of his head showed a depressed skull fracture with
intraparenchymal hemorrhage and subdural hematoma with multiple fractures. By the
time Jim was discharged, he had undergone numerous hospital procedures including
elevation of the depressed skull fracture (the day he was admitted) and a right frontal
craniotomy.
On numerous assessment measures over time, Jim showed impairments in tests
sensitive to right hemisphere and frontal lobe function (consistent with surgical
resectioning of his right frontal lobe). In addition to processing visuospatial
information, the right hemisphere has been shown to be important in understanding
the emotional meaning of nonverbal communication, such as facial expression, voice
prosody (intonation, pitch, and emotional expression), and gestures (e.g., Borod,
1993; Bowers, Bauer, & Heilman, 1993). Moreover, individuals with right
hemisphere brain damage may feel disconnected or have difficulty negotiating social
situations, may have difficulty taking another's perspective, and may display
inappropriate affect (e.g., Lezak, 1995). Self-awareness may also be impaired, and
patients may be unaware of deficits (anosognosia; e.g., Prigatano & Schacter, 1991).
Furthermore, emerging research on right hemisphere functioning and
psychopathology (e.g., depression and anxiety) suggests that we have only limited
knowledge about the complexity of right hemisphere functioning and its role in
emotion, emotional disorders, and well-being (see Heller, 1997; Heller, Etienne, &
Miller, 1995; Heller & Nitschke, 1997).
Jim also showed impairments in frontal lobe function. Frontal regions are involved
in executive functions such as planning, initiation of behavior, purposive action, selfregulation, judgment, assimilation of new information, and adaptation to novel
situations (for a review, see Banich, 1997). Damage to the frontal lobes can result in
social disinhibition, apathy, anergia, impaired cognitive estimation, and diminished
awareness of deficits (e.g., Levin, Eisenberg, & Benton, 1991). Patients with frontal
lobe damage also tend to perseverate or engage in repetitive behavior or inappropriate
continuation of a response. For example, perseveration could take the form of
repeating a word or sentence, writing three or four o's in the word soon, or being
unable to stop an activity such as watching television. Finally, the frontal lobes appear
to be instrumental in emotional regulation or the ability to moderate or control
emotions. In essence, frontal lobe dysfunction tends to have effects throughout the
behavioral repertoire (e.g., Stuss & Gow, 1992).
In sum, we might expect in the social domain that an individual with diffuse right
hemisphere and frontal lobe injury could have problems with (a) social skills such as
turn taking in a conversation (cued by facial expression and voice prosody),
responding appropriately to emotional situations, and showing appropriate affect; (b)
communication skills such as organizing information coherently, not perseverating on
one aspect of a story, and expressing emotion; and (c) visuospatial skills such as the
ability to drive, the ability to follow directions to a new location (such as a friend's
house), and the negotiation of living space. Furthermore, the realities of living in U.S.
society as a person with a disability and limitations in the cognitive, emotional,
physical, and social domains, combined with organic damage to specific areas of the
brain, may lead to depression and anxiety (e.g., Elsass & Kinsella, 1987; Heller, 1997;
Lezak, 1995).
The Adjustment Process
Expectations about recovery are often set in the hospital. Jim made rapid progress
once he was moved from the intensive care unit to the surgical inpatient unit. It was
surprising that, within days, he was walking and able to carry on conversations about
what he did before he was hospitalized. Jim's family became very hopeful that he
might eventually be back to “normal” and that his recovery would continue at the
rapid pace observed on the inpatient (non-critical-care) unit. Unfortunately, because
being able to walk and talk are obvious indications of improvement, sometimes the
more subtle “deficits” are minimized or overlooked.
Jim was discharged to outpatient rehabilitation 20 days after he was admitted. He
returned to the trauma hospital 5 days later complaining of severe headaches. He was
diagnosed with multiple abscesses, probably caused by a staph infection that he had
been treated for when his intracranial pressure monitor was removed. When I asked
Jim's sister Gina why they had driven 150 miles for care that they could have received
in the large city near which they lived, she stated that Jim did not have medical
insurance and that it was easier to drive 3 hr to ensure he would receive good medical
care.
Jim's clinical presentation as an outpatient and during the first and second research
sessions has been documented in detail elsewhere (Mukherjee, 1998; see Appendix
for measures administered). Results from the outpatient neuropsychological
evaluation suggested severe impairments across a number of domains. It was likely
that Jim would have difficulties with navigating space, solving problems, adapting to
novel situations or thinking flexibly, and interpreting and communicating social and
emotional information.
The first research contact was the week after Jim's outpatient neuropsychological
evaluation. Briefly, Jim was impaired on measures of language and memory
functioning. He was not depressed or anxious (as assessed by standardized measures)
and believed that his quality of life was good. However, the research process
underscored the limitations of assessing emotional functioning in individuals with
brain injuries using forced-choice questionnaires. For example, on the Beck
Depression Inventory (Beck, 1987), Jim had the following 0-point responses: “I do
not feel sad,” “I get as much satisfaction out of things as I used to,” and “I can work
about as well as before.” Yet, at points during the interview, he reported that he was
in fact sad, that he wished he could go back to work and this bothered him, and that he
was frustrated.
The second research contact took place 6 months later. Jim's clinical presentation
was slightly improved, although his performance on standardized neuropsychological
assessment measures was uneven (he scored higher on some tests and lower on
others). He continued to show severe impairments on measures of visual and
perceptual functioning and language production. His responses on measures of social
and emotional functioning indicated that he was feeling worse than he had felt 6
months earlier. In my field notes, it was noted that Jim looked much healthier and was
more engaged during the assessment. Emotionally, however, it was as if the reality of
his situation had set in and the routines of his daily life had not improved in the ways
that he and Gina had hoped. Financial and bureaucratic obstacles were also causing
distress. Jim and Gina were worried about how Jim would be able to make ends meet,
which medical providers would accept his “medical card,” and whether Jim would
ever be able to be “independent” enough to live on his own again.
Need for an Advocate
In a report to Congress, U.S. General Accounting Office investigators (1998)
recently concluded that “people without someone to act as their personal advocate
have difficulty obtaining services from multiple programs. … An adult with TBI
without an effective and knowledgeable advocate would probably not receive
services” (p. 14). Although the investigators acknowledged that TBI patient advocacy
is very important, they did not elaborate on what advocacy requires.
The present study not only illustrates the importance of an advocate but contributes
to our understanding of the processes involved. One very clear pattern that emerged
early in the research process was the role of Gina in Jim's adjustment to brain injury.
Gina undertook a tremendous amount of work and invested remarkable emotional and
physical energy. Interview data revealed that Gina's life changed drastically. She
reported increased responsibilities, less time for herself, dealing with iterations of
paperwork, negotiating finances for her brother, and battling with bureaucratic
workers and dominant cultural assumptions about social class and disability status.
Increased Responsibility
As part of her role as advocate, Gina assumed responsibility for Jim. Although
Gina identified herself as the “helper” or “caretaker” of her family of origin, the
responsibilities that she assumed after Jim's brain injury went beyond “feeling
protective” of him when they were younger (even though Jim was older than Gina) or
helping him out occasionally. When he sustained the brain injury and serious
decisions about medical care were being made, her parents and other siblings turned
to Gina to “take over.” Because she had worked in hospital settings (most recently as
an emergency room registration clerk), the rest of the family believed that she would
be best qualified.
By the third research session, Gina had applied for and obtained legal guardianship
of Jim. She was subsequently legally responsible for Jim's financial and medical
decisions. Although Jim was sometimes frustrated with Gina (and called her a
“hemorrhoid” because “she is always riding my ass”), he trusted her to “make the
right decisions” and “help me out.” At the time of the third research session, Gina had
not told her husband that the guardianship had been approved (“He has no idea how
much time I spent towards Jimmy”).
Gina also felt responsible for Jim's whereabouts. On more than one occasion, Jim
got lost and was not able to find his way home. In addition, Gina did not like some of
Jim's friends, and, although she did not “concern herself” with how he spent his time
before, she now worried about “people taking advantage of him, like they would a
teenager.”
Time
An aspect related to increased responsibility was the time that Gina had devoted to
Jim since his accident. Gina made several major changes to her routine. For example,
after the accident she got a beeper “that in the need, if Jimmy has an emergency,
somebody can get me.” She reported that she had no free time after his accident: “The
bottom line is the little bit of free time I used to have, now Jimmy has taken the place.
So Jimmy is my soap operas and my news time.” Gina worked the third shift at a
hospital, and her schedule allowed her to make phone calls and drive Jim to
appointments during the day. She worried about what she would do if Jimmy got
really sick again. The pressure and time commitment left her exhausted and worn out.
Paperwork
Part of Gina's huge time commitment involved the need to fill out (literally) stacks
and stacks of paperwork that had to be completed if Jim was to receive disability
benefits, supplemental security income, food stamps, and Medicaid. In addition, Gina
invested enormous amounts of time and energy to re-create Jim's work history,
financial history, and educational and medical history (which involved contacting
doctors, administrators, and social services, federal, and state agencies). She had to
contact his bank and the post office (to have mail forwarded from his post office box).
She had to file taxes for him in April. Gina had a large accordion folder with all of the
records that she had gathered on Jim's behalf. Her telephone log, documenting only a
fraction of the phone calls that she had made to various agencies, was many pages in
itself. Not surprisingly, a patient with a brain injury that interfered with planning,
organization, initiation, and follow-through would have great difficulty wading
through the “paper mess.”
Negotiation of Finances
Another critical role of the advocate was in the negotiation of finances. Financial
problems were a huge barrier to recovery for Jim. Jim was initially denied disability
benefits, and Gina called a state representative (as suggested by a lawyer whose
advertisement she saw on television); what was “caught in the red tape” was freed,
and Jim was approved. In the meantime, Jim had little or no money “of his own” for
several months and relied on family to support him. Even after Jim started receiving
disability benefits, his income was only $550 a month. In addition, he had a
“spindown” of $250 for Medicaid and had to conserve some of his income in the
event it would be needed. (A spindown is the equivalent of a deductible amount on a
car insurance policy; Jim had to pay the spindown amount before Medicaid would
cover additional medical expenses.)
Gina reported having to file three times for Medicaid before it was approved for
Jim. When she called the trauma hospital to tell them that they would not get paid,
they referred Gina to a private organization that helps people that they truly feel are
disabled get approved. The initial denial notice from the state agency that deals with
Medicaid benefits stated that Jim “did not meet departmental definitions of disabled.”
Apparently, the intervention by the private organization remedied the misinformation.
Note, however, that in the current system it is possible that someone with such a
severe brain injury would not meet a definition of disabled. Even after the Medicaid
was approved, Gina was frustrated by the inefficiency and lack of information about
what to expect from the system. After fighting “tooth and nail with those dumbos,”
they “never tell you point blank how much you are going to receive.”
Another financial barrier was the lack of affordable housing. Again, the current
political and sociocultural climate and underfunding of services for the poor affected
Jim's situation. Gina reported that no applications were being taken for governmentsubsidized (Section 8) housing and that, even with someone else controlling Jim's
limited income, it was impossible to find affordable housing. Gina remarked, “They
have no funding this year. So now where do you go for help, you see?”
Issues Related to Class and Disability Status
Jim's history before the car accident contributed to the assumptions that were made
about him by various professionals and agency employees. At 43 years old, he had a
sporadic (“unstable”) work history and had engaged in some high-risk behaviors such
as driving recklessly. He dropped out of high school and worked a series of part-time
jobs, the most recent one being as a temporary worker in a factory. When he was
younger, his family had been on public aid.
After Jim had the accident, his social status confounded the difficulties he faced
because of his TBI. Jim's experiences as a working-class person with a brain injury
illustrate the degree to which pervasive stereotyping about social class influences
access to resources. A less obvious dynamic is the social and emotional cost of
dealing with the disrespect commonly encountered by individuals in our society
whose life experiences fit societal expectations of a less valued citizen.
The disrespect and conflation of class with disability status were instantiated in an
interaction that Jim and Gina had with a woman who worked for “general assistance.”
She asked whether other members of their family were receiving general assistance
and implied that Jim was trying to make money out of the system. As Gina reported,
“Don't tell me you're going to sit there and look at him, not know he has a problem,
know that there's no way in God's earth that he lied to you.” The assumption that
people who use social welfare services are trying to take advantage of the system was
pervasive. Gina reported the “nasty lady” to her supervisor, and “that lady got in
trouble.” In this example, Jim eventually received the services for which he was
eligible. However, the daily hassles, the questioning of Jim and Gina's intentions,
having to fight for services for which he was obviously eligible, and having negative
interpersonal interactions with bureaucratic workers made Jim and Gina even more
exhausted and stressed than a family with economic resources and social capital
would have been in the same circumstances.
Surprisingly, Gina had not met face to face with almost any of the “workers” she
dealt with, and she often had to deal with automated phone systems. When she did
“talk to a person,” she would often be told that she would have to be called back (but
was not) or would be put on hold (more often than not). She also reported having to
deal with “attitude.” Gina's battles with the bureaucracy were filled with delays and
lack of easily accessible information.
Gina reported that because she was familiar with the public aid system, she
thought that it would be easier to figure out the social services that Jim needed. But
her past experiences and knowledge of how “the system” works did not translate into
knowledge of the rules for disability and social security. Furthermore, when she called
to find out who was eligible for disability, she found out that “they don't even have a
list of disorders. It's on a case-by-case basis. Now what if you get someone who
doesn't like your case?”
Another issue in Jim's adjustment process was labeling. While Gina was “digging
for his paperwork,” she found out that Jim was eligible for special education services
in school, and it was this label that she used to try to obtain the needed housing
services. Apparently, Jim was ineligible to live in a supported living environment (or
group home) because “his auto injury itself does not qualify him for nothing, no
special help, nothing 'cause there's different classifications. But, when you say that he
was in special ed., and they labeled him mildly disabled, then maybe.” Essentially, if
Jim had the right label, then he would be able to live in a group home for individuals
with developmental disabilities. If he had not had the car accident, Gina would not
have even thought of him as developmentally disabled. In fact, she was surprised to
read his school reports and “had no idea that Jim was reading and doing math at that
level.” Persons with brain injury do not neatly fit into any of the categories for the
services to which Gina has access (it may be different in other parts of the country),
so finding the right label was an important way to overcome obstacles.
IMPLICATIONS
Data gathered from multiple sources (e.g., medical records, neuropsychological
assessment, participant observation, and interview) and sustained contact with a
patient and his family over a 10-month time span present a complex and
multidetermined picture of adjustment to brain injury. The case illustrates the critical
need for an advocate, a requirement that becomes particularly acute when cognitive
disabilities interfere with a person's ability to function effectively on his or her own.
In addition to the considerations described earlier (e.g., costs to the advocate and
social and institutional barriers exacerbated by lower social status), the findings also
speak to a number of sequelae associated with the sociocultural environment in which
people with a brain injury find themselves.
Loss of social autonomy is an area that is increasingly being recognized as a
barrier to meaningful recovery from brain injury. Like Jim, many patients who do not
need assistance in activities such as eating or dressing themselves may still be
dependent on others for financial help and advice, transportation, legal assistance, and
other matters. In a recent epidemiological study (Mazaux et al., 1997), investigators
followed up with TBI patients 5 years after their injury to assess which
neuropsychological and neurobehavioral indexes were related to loss of social
autonomy (as defined in the European Brain Injury Society's European Head Injury
Evaluation Chart). The social abilities that were most consistently impaired in the 5year follow-up were as follows: “performing administrative tasks and financial
management, writing letters and calculating, driving, planning the week, and using
public transport” (Mazaux et al., p. 1316).
The concepts of autonomy and dependence are recurring themes in Western
(American and European) conceptions of disability. Although being seen as
dependent is often socially devalued, the concept of dependency may have different
connotations and implications in different cultures (see Ingstad & Reynolds Whyte,
1995, for examples of the relationship between disability and culture). Sociocultural
discourses about brain injury, impaired functioning, and limitation play into a greater
cultural climate that encourages values related to independence and the ability to
overcome obstacles. For example, typically (or stereotypically) in the United States,
adults are expected to live separately from their parents, vocational capability is a
source of status and worth, and asking for help and assistance can be seen as a sign of
weakness. Class, ethnicity, sexual orientation, and gender obviously affect an
individual's cultural context, and stereotypes about any of the multiple groups that
people may belong to can compound and complicate ideas about independence. For
example, in Jim's case, being a working-class heterosexual White man is likely to
mean that he should be a “breadwinner,” or that he should not have to face as much
institutional discrimination as a non-White person of the same socioeconomic class
but more than a White person of a higher socioeconomic class.
In sum, being seen as dependent on others is typically socially devalued in the
United States. A more complex picture emerges when we look at the various contexts
and categories that people occupy, but it is likely that there is stress associated with
being viewed as dependent. This goes above and beyond the actual difficulties that
Mazaux and colleagues (1997) mentioned when they discussed social autonomy.
Dependence among people with a brain injury is further heightened by institutional
barriers such as access to services, applying for and receiving governmental benefits,
negotiating the transportation system, and the time and organization required to make
sense of “the system.” The relationship between institutional barriers and health has
been addressed with other marginalized groups such as ethnic minorities (Cummings
& DeHart, 1995) and women (Koss & Woodruff, 1991), but the issues of institutional
barriers to recovery from brain injury have not, to our knowledge, been articulated in
the research literature. Furthermore, numerous researchers have commented on the
need for consistent and reliable measures of outcomes after brain injury (e.g., Body &
Campbell, 1995; Malec & Basford, 1996), and several have included measures of
economic self-sufficiency and social integration as important components of outcome,
yet institutional barriers to achieving these positive outcomes are not acknowledged.
Many rehabilitation psychologists and clinical neuropsychologists are aware of these
barriers, but the realities of living with a brain injury or other disability have been
primarily articulated by activists and consumers rather than providers (e.g., Fries,
1997). For example, the Health Resource Center for Women With Disabilities at the
Rehabilitation Institute of Chicago has sponsored a series of conferences on health
care issues that address barriers such as the impact of managed care on access to
services and quality of care (see Olson & Lee, 1996; in addition, see Gill, Kirschner,
& Reis, 1994, for a refreshing perspective on the barriers faced by women with
disabilities). Even the U.S. government is slowly realizing that there are substantial
barriers to receiving adequate long-term services (see U.S. General Accounting
Office, 1998).
Finally, other issues related to disabled status must be noted. There are numerous
assumptions about what being disabled means. There is a long tradition of treating
individuals with some type of disability as not whole or as fundamentally flawed.
Furthermore, one of the assumptions about disability discussed by Fine and Asch
(1988) is the following: “When a disabled person faces problems, it is assumed that
the impairment causes them” (p. 9). We acknowledge that Jim had a severe injury and
has significant impairments but argue that many of his problems can be viewed as
institutional barriers that exacerbate and compound his difficulties. If the focus is on
the disabled person as “broken,” then we will not be likely to examine the system
factors that need to be fixed. Similarly, if we treat the brain injury as solely an
individual problem, then we will not be as likely to research and remediate the
sociocultural factors that contribute to the adjustment process. In summary, moving
beyond a focus on an individual's deficits and impairments by adopting the broader
cultural psychological and rehabilitation psychological perspective on the adjustment
process will give clinicians and researchers a broader context for understanding brain
injury and helping patients adjust.
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APPENDIX A
Measures Administered
Table 1.
This research was supported by the Carle Development Fund (Carle Foundation,
Urbana, Illinois) and the Mary Jane Neer Research Fund (College of Applied Life
Studies, University of Illinois at Urbana-Champaign). We wish to thank Peggy J.
Miller, whose contribution throughout the research process was invaluable.
Correspondence may be addressed to Debjani Mukherjee, Maclean Center for
Clinical Medical Ethics, University of Chicago, W732—MC 6098, 5841 South
Maryland Avenue, Chicago, Illinois 60637.
Electronic mail may be sent to dmukherj@medicine.bsd.uchicago.edu
Received: November 15, 1999
Revised: January 18, 2000
Accepted: January 19, 2000