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CERTIFICATION
Understanding and Optimizing Family Adaptation to Traumatic
Brain Injury
Mitchell Rosenthal, Ph.D.
Director, Psychological Medicine
Marianjoy Rehabilitation Center
Wheaton, Illinois, 60189
The significance of the family in the process of brain
injury rehabilitation can be traced to several major sources:
(1) research studies which have documented how families are
impacted by traumatic brain injury (Brooks & McKinlay, 1983;
Brooks, Campsie, Symington, Beattie and McKinlay, 1987; Lezak,
1978; Livingston, 1987; Oddy, Humphrey & Uttley, 1984; Romano,
1974; Panting & Merry, 1972); (2) emergence of consumer
organizations, such as the National Head Injury Foundation in
the United States and Headway in Britain; and (3) the
widespread incorporation of families into the rehabilitation
process within comprehensive brain injury rehabilitation
programs.
The pervasive neurobehavioral deficits which result from
injury to the brain are now commonly recognized as those which
primarily comprise the brain injured person's capacity to
think, reason, make adequate judgments, remember, perceive,
plan and execute actions, manifest emotion, behave in a
socially appropriate fashion, and exist as a productive member
of society (Levin, 1972). In cases of severe brain injury, the
victim of head injury, though often physically intact and
superficially recognizable to the family, think and act in a
manner which is unlike their pre-injury behavior and quite
socially maladaptive. The "burden" of care and management of
this "changed" person, after acute neurosurgical and medical
1.
management ends, is often squarely on the shoulders of the
relatives.
In this paper, we will examine (1) the specific types of
deficits which most directly impact on the family; (2) the
emotional adjustments often seen on the part of family members;
(3) the changes in roles and responsibilities so often
necessary for family members; (4) the methods used by health
care professionals to facilitate the family adaptation process;
and (5) research questions which should be addressed in future
studies.
In understanding the nature of the impact of brain injury
on the family, a few principles derived from research should be
stated. As Bond (1975; 1984) and others have noted, after the
first year post-injury, the family is more troubled by the
behavioral or personality disturbances exhibited by their
relative than any other sphere of difficulty - e.g. cognitive,
physical. Though families learn to understand the nature of
brain injury and develop coping strategies, the degree of felt
"burden" does not significantly decline after the first year.
In fact, Brooks (1987) has recently reported on a series of 134
patients up to seven years post-injury and noted that the level
of burden remains significant. There is some correlation
between severity of injury (as measured by duration of
post-traumatic amnesia) and degree of burden, but it is not a
1:1 relationship. In fact, it should be kept in mind that
survivors of "minor" head injury (i.e. those who sustain a
brief loss of consciousness) can experience significant
2.
psychosocial disability for months and years after the injury
and create great stress for families (Gronwall, 1986)
The burden upon the relatives after head injury is
complicated even further by the loss of social support from
significant others, such as close friends and other members of
the community. Kozloff (1987), in a recent study of the social
networks of 37 severely head injured patients and 39 of their
signficant others, concluded that:
" The results of the present study show that
after the initial phases of recovery, the
patient is dependent on his primary kin for
financial, emotional and task-oriented support.
This pattern of dependency causes problems
within the structure of the family (p.20)."
Thus, the understanding of long-term family adaptation to brain
injury is partly dependent on the analysis of the social
support system which is likely greatly diminished after severe
traumatic brain injury.
Specific deficits which impact the family
One of the most frustrating problems for head injured
patients and their families is impairments in attention and
memory Even after the initial period of post-traumatic
amnesia resolves, the brain injured person often has
3.
significant difficult in maintaining attention on a task,
storing information in short-term memory and retrieving the
information at a later point (Whyte, 1986) These deficits are
often easily demonstrated on standardized neuropsychological
tests, but may be more apparent to families in everyday life -
forgetting a telephone message or an appointment, inability to
remember several items on a shopping list, inability to focus
in on a conversation when other persons are talking or when
there is background noise (such as radio or TV). These
difficulties are even more troublesome in a school situation or
on the job where ongoing focused attention or memory is
critical to success.
Damage to the frontal lobes often are responsible for the
manifestation of so-called executive deficits (Lezak, 1982)
This category of deficits encompass the abilities to initiate,
plan, organize, monitor and sustain behavior. Even a casual
observer of brain injury will often note that the brain injured
patient tends to be more directed by external, than internal
stimuli. That is, without structure, verbal and physical
guidance, frequent coaxing and positive reinforcement, and
close supervision, many brain injured patients will fail to
spontaneously generate any goal-directed behavior or, if a
behavior is started, will fail to monitor the correctness of
their actions or fail to complete the intended task. In severe
case of executive deficits, the patient will be asked to brush
his teeth, start to put the toothpaste on the brush and lose
his attention while in the midst of performing the activity. Or
in a work situation, the patient may be addressing envelopes
4.
for mailing from a pre-typed list, but not doublecheck the list
to see if the finished label is correct. In the home
environment, this inability to monitor activities often creates
a need for full-time supervision on the part of family members,
who fear for the safety of their relative if left alone.
Inappropriate social behavior is a broad category of
dysfunction which includes altered affect and emotions,
childlike dependency, disinhibition, excessive talkativeness,
and lack of awareness or frank denial of deficits (sometimes
referred to as anosognosia). This sphere of disability is often
the one which imposes the greatest amount of stress upon the
family. The brain injured patient is often childlike and
excessively dependent upon family members. So often, the social
network of the patient dissipates within weeks of return to the
community. Therefore, the patient is left without external
social supports and must rely on family members exclusively. A
"childlike" brain injured spouse will often display jealousy
when the partner leaves the home for even short periods of time
and may display temper tantrums in response. Excessive
talkativeness may be clearly manifest when the family visits a
restaurant and the head injured relative talks excessively,
loudly and inappropriately to strangers and causes great
embarassment. The frank denial of deficits may lead a head
injured patient to reject or fail to cooperate with post-acute
treatment programs and thus block any further progress in
recovery. In sum, the inappropriate social behavior leaves the
relative the unenviable task of managing a person who is
5.
chronologically an adult, but more of a young child, from a
psychosocial standpoint.
This is a very brief overview of several key areas of
deficit which impact on the family. There are many other
important neurobehavioral problems which occur, such as
depression and suicidal behavior, communication deficits,
apathy and lethargy, decreased sexual drive, and the like. It
is important to recognize that each brain injury produces a
unique constellation of deficits and resultant family problems,
owing to the specific location of brain damage, severity of
injury and associated injuries, pre-injury strengths and
weaknesses of the patient and family system. In each case, a
careful assessment of the all of these factors is necessary to
successfully intervene with the family of the brain injured.
Emotional ad 1justments and coping strategies
A common early reaction to traumatic brain injury is denial
(Romano, 1974) in which the "fact" of having sustained a
catastrophic life-threatening injury is blocked from objective
reality. The family who observes their loved one in a coma with
tubes and medical apparatus tied to them may feel that this is
a terrible nightmare and is unreal. After the patient emerges
from coma, there is a gradual recognition and acknowledgement
of the injury, but an inability to fully comprehend the
immediate as well as long-term effects. In the period of
emergence, the patient starts to exhibit agitated, confused,
sometimes bizarre behavior which is completely unlike their
former personality. Upon entry into the acute rehabilitation
6.
phase, families are often provided with extensive information
as to what the effects of brain injury are and the likelihood
of some permanent alterations in cognitive and behavioral
function remaining. This information is difficult to accept,
and often evokes a secondary denial, in which the family
refuses to accept the notion that long-term or permanent
changes will remain. This is understandable, in view of the
fact that families often observe rapid improvement in all areas
of physical and neurobehavioral function in the rehabilitation
hospital and naturally are reinfroced in their belief that the
observed deficits will be transient.
Following discharge from the acute hospital to home
(usually within 3-6 months of injury), the initial reaction is
one of great joy and happiness. The family and patient are so
relieved to be within the "safe" home environment that there is
little immediate attention directed toward the changes in
everyday life which are necessitated by the limitations in
function.
After the initial "honeymoon" period at home, there are
feelings of discouragement and a sense that perhaps the changes
in their relative may last for a very long time. The brain
injured person may be attending outpatient therapy or day
treatment, but the rate of improvement has slowed in many areas
and problems in day-to-day management of behavior at home
become more prominent and frustrating. Financial hardships may
be present, as residual hospital bills pile up, lost wages are
missed, alternate sources of disability support have not yet
been approved, a pending legal case starts to drag on, and
7.
future prospects of returning to normalcy in the family are
dashed, if not destroyed.
At this point, many families start to experience feelings
of depression or despair (Lezak, 1986) Conflicts between
family members begin to surface, as the tension of living with
a brain injured relative creates friction and disrupts healthy
communication patterns. During this period, family members may
first gain a fuller appreciation and acknowledgement of the
permanence of certain defiicits and the realization that their
loved one may never resemble the person that they formerly knew
and lived with. A process of disengagement may begin where the
relative and patient spend more time apart. A process of
mourning for the "partial death" of their love one is
frequently observed (Rosenthal & Muir, 1983). Family members
may now actively seek professional intervention or peer support
through local chapters of the National Head Injury Foundation.
It is not uncommon for families of head injured patients to
seek out medication (Panting & Merry, 1972) to deal with their
own anxiety.
Finally, the family often reaches a stage of reorganization
(Lezak, 1986), usually after 18-24 months, by which time the
family has experienced a great deal of inner turmoil and pain,
understood more fully the meaning of brain injury, accepted the
reality that permanent limitations in function are likely, and
are engaged in the process of seeking out community-based
social and vocational programs which can help upgrade their
relative's capacity to function more independently.
8.
Effects on role relationships and family responsibilities
A variety of changes within role relationships are often
necessitated by traumatic brain injury. At least 50% of
survivors of brain injury are unable to return to work within
the few few years post injury, if ever. Those that do return to
work often are employed at a lower capacity than their
pre-morbid employment. The net result is often a diminished
amount of earnings and need for other family members to become
employed or to be primary source of income for the family.
Thus, the brain injured person who previously was employed and
independent may need to assume the role of a financially
dependent person.
Though not often recognized, the presence of a head injured
relative within the family system can dramatically impact the
siblings within the family. Siblings may experience guilt
feelings about their brain injured relative due to the
circumstances of the accident. They may also feel resentment
toward the overwhelming amounts of attention their sibling is
receiving. When the sibling of the brain injured person is an
adolescent, these feelings are rarely directly expressed.
Instead, it may be manifest in school failure, acting out
behavior or failure to accept their brain injured sibling in
their new condition. Beause families tend to handle their newly
injured relative in a protective manner, many previously held
jobs within the family may be re-directed toward the healthy
sibling(s), which causes additional resentment. The
chronologically younger sister may now be functionally the "big
9.
sister," a change which may be very difficult for both the head
injured person and sibling to accept.
One of the most common problems in role relationships after
traumatic brain injury is the marital relationship. Though
there are no available statistics which cite increased divorce
rates, clinicians who work with the brain injured are fully
aware as to the changes in marital relationships which occur.
Due to the emotional and physical dependency, it is difficult
for the "healthy spouse" to view their loved one as a sexual
partner. In a study of the wives of brain injured Israeli
soldiers, Rosenbaum and Najenson (1978) found that 18 wives of
brain injured men go through a crisis period one year following
their husband's injury. At that time, hopes for a complete
recovery vanish and they are faced with living with a person
whose needs are great while he can give little in return
(p.881)."
Though it is commonly believed that mothers can adapt
better to assuming the role of primary caregiver after brain
injury, the recent study by Brooks and co-workers (1987) has
indicated that there are no significant difference between
levels of burden as reported by wives and mothers several years
after brain injury. For the head injured adult who may have
lived independently for many years, moving back to the parental
home can be traumatizing in and of itself. Indeed, the need to
live with parents again may reinforce an emotional regression
which had been intially produced by brain damage. To be sure,
some gratification is obtained through the re-establishment of
a close parent-child bond, but eventually the bond may become
10.
symbiotic and may negative impact on future growth and change
in the head injured person.
Methods of family intervention
The unique and complex nature of traumatic brain injury
causes great confusion and anxiety for family members. They are
often bewildered by the many changes in both physical and
neurobehavioral function in their relatives. For this reason, a
variety of family intervention strategies may be considered.
First, it is now commonplace for most rehabilitation
programs to include a family education component in their
protocol. This part of the rehabilitation program is designed
to give families a good understanding of the nature of brain
injury, what types of specific deficits can be related to sites
of brain damage, how the rehabilitation process aids in
recovery and promotes re-adaptation, and what methods can be
used by families to facilitate growth and improvement. A
variety of methods may be used to accomplish family education -
through individual sessions with physician, social worker or
neuropsychologist; by attending group sessions in which many
families of brain injured patients attend, learn, and interact
with rehabilitation specialists; by participating in "family
education days" in which they spend the entire day in the
rehabilitation hospital, accompanying their relative to
therapies and being instructed in methods of care by the health
care professionals; and through educational brochures,
instructional videotapes and books which can be obtained
11.
through the National Head Injury Foundation or at a local
rehabilitation facility.
Another common type of intervention is termed family
counseling. " The purpose of family counseling is to assist the
family in dealing with the overwhelminmg feelings of loss and
helplessness. It is also designed to help the family understand
and accept the disability and its potential consequences (e.g.
increased dependence, impaired cognitive and behavioral
functioning, decreased physical abilities). Family members are
given the opportunity to express their feelings of guilt,
anguish, anger, sadness and loss. As discharge approaches,
families can become apprehensive since they have been given an
implicit or explicit message that a plateau has been reached.
During the transition from hospital to community, the family
counselor can play a key role in helping the family anticipate
future problems and be more psychologically and physically
prepared to assume the burden of care. Frequently, the patient
and family may maintain unrealistic expectations that
restoration of function will "magically" occur when the patient
can return home. The counselor can gently prepare the family
for the realities of life with a brain injured relative and
maintain close communication to provide the support so often
needed but rarely requested.
For a select number of families, a more intensive type of
intervention may be needed - family therapy. Family therapy may
be defined "as a professionally organized attempt to produce
behavioral changes in a disturbed marital or family unit by
12.
essentially interacting non-physical methods (19, P. 1 o " " In the
case of brain injury, family therapy can be useful for families
with a pre-morbid history of dysfunction or those in which the
presence of head injured relative has created catastrophic
reactions on the part of certain family members which produces
maladaptive communication and interaction within the family.
The goals of family therapy are to: (1) provide a
supportive environments where all family members can freely
verbalize feelings about the trauma and its effects upon the
family; (2) educate the family about the nature of the deficit
in communication and develop methods for resolving conflicts
within the relationship patterns of the family system; and (3)
examine, clarify and restructure roles and responsibilities
within the family system. Some techniques often used include:
(1) an emphasis on the mutuality of responsibility for the
family problems and shifting the burden of guilt from the
identified patient to the family system; (2) analyze, focus on
and strengthen the positive aspects of the family system; (3)
explore dysfunctional patterns of interaction by re-enacting
family conflicts and assisting family members to problem solve
to alleviate these conflicts; and (4) prescribe "homework
assignments" for the family to practice outside the sessions to
foster generalization of behavior change. The aforementioned
framework for family therapy is also easily applied to a
marital counseling situation, as well.
Another major form of family intevention would be the use
of "family support" groups. As family-initiated organizations
have grown within the past decade, there has been a
13.
proliferation of local family support groups which are
conducted by the families of the brain injured, without
professional leadership or participation. For many families,
this type of intervention is better accepted than professional
help. Those who have personally experienced firsthand the
trauma of head injury have much to offer those who are in the
process of trying to make sense of their experience. Besides
emotional support within the sessions, often inter-family
friendships and support systems are created which assist the
family on an ongoing basis. Further, concrete information about
the merits and deficiencies about certain treatment facilities
and where and how certain types of financial or social agency
support can be obtained, is provided.
Research questions
Concept of burden and long-term adaptation
A means of assessing the impact of head injury on family
members has been by asking the relatives to rate their distress
on a seven point scale, with a low score representing little
distress and a high score signifying the highest level of felt
distress (Brooks et al. ; 1987). By categorizing relatives
response into low, medium and high burden categories, Brooks
and co-workers have attempted to correlate the relationship
between post-traumatic amnesia, changes in residual deficits
and parent VS spouse relationships and the degree of felt
burden. In following up patients to seven years post injury,
results suggested that the level of burden did not diminish,
14.
that severity of injury (specifically length of post-traumatic
amnesia greater than 14 days) often results in high relative
burden and that there was no differential ratings of reported
burden by wives, as compared to mother. This study, as well as
others utilizing the concept of burden as a means of
quantifying the relatives' level of distress, was performed in
the United Kingdom, in which formal, extended late
rehabilitation programs do not exist. It would be of great
value for researchers in the United States to attempt to
replicate this study to determine whether the findings reported
to date have universal generalizability or may be partly a
function of the extent to which patients and their relatives
have received extended rehabilitation services. It would also
be useful to prospectively analyze how burden and family
distress changes over time and stage of recovery.
Effectiveness of family intervention techniques
Though families have become a focus for educational and
therapeutic intervention in the rehabilitation process, there
is no data which has been produced which clearly documents the
manner and degree to which family involvement in the
rehabilitation process affects outcome. Specifically,
controlled studies are needed to document whether structured
family education programs produce changes in knowledge,
attitudes and behavior in family members. Are occasional family
conferences during inpatient rehabilitation helpful ? Do family
members benefit more from weekly counseling sessions with a
psychologist or social worker ? Are therapeutic weekend passes
beneficial ? Should families become involved with support
15.
groups prior to patient discharge from acute rehabilitation ?
Can family therapy significantly impact a family with
dysfunctional interaction predating the brain injury ?
Effects of head injury on the family system
Though a number of studies (Brooks et al, 1987; McKinlay,
1987) have documented the presence of burden on the part of
relatives and its relationship, psychological reactions on the
part of relatives and social role functioning, there exists a
need to examine the impact of head injury on the entire family
system. In what manner are family conflict, communication,
cohesion, organization, role-relationships and the like
affected by traumatic brain injury. An instrument such as the
McMaster Family Assessment Device (FAD) recently used to
examine the relatives of stroke patients by Evans and
co-workers (1987) or the Family Environment Scale developed by
Moos (1972) might be used to prospectively analyze family
system functioning. Within an analysis of family system
function, some attention should be directed toward assessing
sibling relationships. Anecdotally, clinicians have noted that
the siblings of the head injured victim have difficult
accepting the changes in their head injured brother or sister,
may experience school problems or display attention-seeking
behaviors.
Specific effects on the family
Though it has been documented that a head injury negatively
affects the family, few large scale studies have addressed and
documented the frequency and nature of social dysfunction after
16.
head injury. There needs to be large scale, multi-center
studies which document the frequency of divorce, marital
separation, re-marriage, financial hardships, job changes,
emotional disorders, etc. and make comparisons to a comparable
"normal" population. This may be accomplished through state or
national head injury registries, a national data collection
system or through studies similar to the one recently performed
by Jacobs (1987) in Southern California, in which 142 families
responded to a 750 question survey about daily living activity
patterns. In addition, the question of whether and to what
extent family members experience psychological disorders after
injury, seek and receive psychotherapy or psychotropic
medication has only been occasionally and incompletely
addressed in previous research. Further, there is a need to
differentiate between the effects of pediatric head injury on
the family as opposed to adult head injury and what the
resulting needs might be.
Need for specialized services
There are a variety of services which families often need,
but may not have access to after traumatic brain injury. Some
of these services include: respite care, legal advice regarding
conservatorship or guardianship, professional case management,
financial assistance, ongoing social support, transportation,
and in-home therapy services. Though the availability of these
services has increased greatly over the past five years, there
are likely many rural or underserved geographic areas where
families have limited access to these services. The development
of a coordinated national data base and state brain injury
17.
registries may be a mechanism for identifying the magnitude of
this problem - i.e. the number of families who are in need but
unable to access these important family services.
Training family members as "therapists"
Though family members have been accorded a central role in
the rehabilitation process and routinely receive education and
supportive counseling, it may be that family members could be
more effective if they received formal, structured training in
cognitive and behavior management skills. This notion derives
from the behavior therapy literature in which parents have been
effectively trained as "therapists" to manage non-compliance,
temper tantrums and other behavior problems exhibited by their
own children. With the application of cognitive rehabilitation
and behavioral management to brain injury patients, families
have been eager to learn how they can apply these "new"
techniques at home. Currently, Jacobs (1986) and co-workers at
UCLA are attempting to test the efficacy of a family training
model. This technique holds great promise for providing
families with a increased feeling of confidence in being able
to better care for their relatives and perhaps create more
optimal family adjustment.
18.
REFERENCES
Bond, M. (1984). The psychiatry of closed head
injury. In N. Brooks (Ed.), Closed head injury:
Psychological, social, and family consequences (pp.
148-178). New York: Oxford University Press.
Bond, M. (1975). Assessment of the psychosocial
outcome after severe head injury. In Symposisum on
the Outcome of Severe Damage to the Central
Nervous System (Ciba Foundation Symposium No. 34,
Series, pp. 141-157). Amsterdam: Elsevier/Excerpta
Medica.
Brooks, N., & McKinlay, W. (1983). Personality and
behavioral differences after severe head injury - a
relative's view. Journal of Neurology, Neurosurgery
and Psychiatry, 46, 336-344.
Brooks, N. Campsie, L., Symington, C., Beattie, A.,
and McKinlay, W. (1987). The effects of severe head
injury on patient and relative seven years after
injury. Journal of Head Trauma Rehabilitation, 2(3),
1-13.
Diehl, L. (1983). Patient-family education. In
Rosenthal, M, Griffith ER, Bond MR, Miller JD (eds.)
Rehabilitation of the head injured adult.
Philadelphia: F.A. Davis, 395-406.
Evans, R.L., Bishop, D.S., Matlock, A-L., Stranahan, S., &
Halar, E.M. (1987). Family interaction and treatment
adherence after stroke. Archives of Physical
Medicine and Rehabilitation, 68, 513-517.
Glick, I.D., & Kessler D.R. (1974). Marital and family
therapy. New York: Grune and Stratton, p.l.
Gronwall, D. (1986). Rehabilitation programs for
patients with mild head injury: components,
problems and evaluation. Journal of Head Trauma
Rehabilitation, (2) 53-62.
Jacobs, H. (1987). The Los Angeles head injury survey:
project rationale and design implications.
Journal of Head Trauma Rehabilitation, (2) (3),
37-50.
Kozloff, R. (1987). Networks of social support and the
outcome from severe head injury. Journal of Head
Trauma Rehabilitation, 2 (3), 14-23.
19.