Aspen Pub.

/JHTR AS124-07 June 14, 2002 15:4 Char Count= 0

A Structured Approach to Family

Intervention After Brain Injury

Objective: Given the limitations of the literature, a structured approach to helping families after brain
injury is clearly needed. Main Outcome Measures: On the basis of considerable clinical experience and
research review, this article describes the Brain Injury Family Intervention (BIFI), developed to address
common issues, concerns, and challenges. The foundation of the BIFI is a curriculum that includes 16
intervention topics, self-evaluation tools, and treatment strategies. Conclusions: Despite individual dif-
ferences, families often encounter similar problems in their attempts to resume normal lives. A structured
approach to family intervention can help mitigate commonly encountered problems. Key words: family
intervention, support systems, therapy

Jeffrey S. Kreutzer, PhD, ABPP

Professor and Director
Rehabilitation Psychology and
T HE REHABILITATION literature offers
substantial information regarding brain
injury neurobehavioral sequelae, family mem-
Neuropsychology bers’ reactions to injury, emotional function-
Department of Physical Medicine and ing, risk factors for poor adjustment, and
Rehabilitation changes in family functioning. The literature
Virginia Commonwealth University also indicates that family members report in-
creased stress, poor concentration, difficulty
Stephanie A. Kolakowsky-Hayner, MA making decisions, social alienation, isolation,
Assistant Professor and feeling overwhelmed as a result of the pa-
Department of Physical Medicine and tient’s injury.1–4 Common challenges experi-
Rehabilitation enced by family members include providing
Virginia Commonwealth University long-term care for the person with the injury;5

Sarah R. Demm, PsyD

Address correspondence and reprint requests to: Jeffrey
Postdoctoral Fellow
S. Kreutzer, PhD, ABPP, Department of Physical Medi-
Department of Physical Medicine and cine and Rehabilitation, Virginia Commonwealth Uni-
Rehabilitation versity, Medical College of Virginia Campus, 1200 East
Virginia Commonwealth University Broad Street, Room 3–102, Box 980542, Richmond VA
23298–0542. Telephone (804) 828–9055; Fax (804)
828–2378. E-mail: jskreutz@hsc.vcu.edu.
Michelle A. Meade, PhD
Assistant Professor This investigation was supported in part by
(#H133P2006) from the National Institute on Dis-
Department of Physical Medicine and ability and Rehabilitation Research. We would like
Rehabilitation to thank Jennifer Marwitz, Debbie West, and the
Virginia Commonwealth University many families and persons with brain injury for their
Medical College of Virginia Campus invaluable contributions to the development of the
Richmond, Virginia BIFI.

J Head Trauma Rehabil 2002;17(4):349–367

°
c 2002 Aspen Publishers, Inc.

349
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
350 JOURNAL OF HEAD TRAUMA REHABILITATION/AUGUST 2002
changing work responsibilities to care for the
survivor; financial difficulties because of loss
of income and medical expenses;6 increased
household, financial, and childcare respon-
sibilities; negotiating complex health care
systems;7,8 communication difficulties with
the patient and between family members; and
changes in family member’s roles.9 The reac-
tion and adjustment of family members seems
to depend, in part, on their relationship to the
person with brain injury.10 Spouses who ful-
fill primary caregiving roles for survivors are
found to be more distressed than their part-
ners with disabilities.11 In fact, studies indi-
cate that spouses often suffer to a greater de-
gree than parents.1,2 Their distress has been
attributed to changes in role expectations, fi-
nancial status, and family functioning.
A number of researchers have focused on
the needs of family members and the extent
to which their needs are being met. Early stud-
ies identified a variety of commonly reported
family needs, including the need for informa-
tion about the survivor’s condition, treatment,
and prognosis; information about resources
and financial planning; effective communica-
tion with professionals; emotional support;
respite; and maintenance of hope.12–15 More
recent studies have focused on changes over
time and the extent to which needs have
been met. A recent review of the family
needs literature found that the most important
family-identified needs related to information,
whereas the least-met needs were often re-
lated to emotional support.16,17 Several inves-
tigators have proposed that relatives report in-
creased stress and unmet emotional support,
instrumental support, and professional sup-
port needs over time.18–22 Serio et al17 pro-
posed that this trend is likely related to the
scarce availability of professional and com-
munity assistance beyond the acute stages of
injury.
Lezak23–25 was among the first to describe
the relationship between brain injury seque-
lae and family adjustment. She alerted clini-
cians to common family reactions, the role
of family expectations, and the prevalence of
depression. Lezak implored family members
to take care of themselves and recognize that
their emotions were natural reactions. Muir
et al’s26 seminal chapter on brain injury family
intervention methods discussed family ther-
apy, patient–family education, respite care,
family support groups, and behavioral fam-
ily training. Later, several other authors27,28
provided guidance for intervention reiterat-
ing the techniques described by Muir and col-
leagues. The authors also identified common
family reactions, ineffective coping strategies,
and neurobehavioral consequences of injury.
Developed specifically for the brain injury
population, their articles provide helpful guid-
ance to practitioners. Unfortunately, they of-
fer limited detail for professionals desiring to
establish a comprehensive program that ad-
dresses family members’ diverse needs.
Rehabilitation teams continue to emphasize
the importance of supporting and assisting
families during the long-term recovery pro-
cess. Unfortunately, the literature offers little
information about treatment implementation.
An organized approach to helping families ad-
dress their most salient issues, concerns, and
challenges is clearly needed. The Brain Injury
Family Intervention (BIFI) was developed on
the basis of considerable clinical experience
and research review. This article describes
the assumptions underlying the BIFI, family
assessment, and intervention modalities. De-
tailed information is provided about the BIFI’s
foundation, consisting of an intervention cur-
riculum that includes 16 topics and a set of
evaluation tools.
THE BIFI
Underlying assumptions
Successful intervention requires a clear un-
derstanding of major challenges faced by
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
family members. For example, family mem-
bers must cope with unexpected problems
soon after the injury and, in many cases, for
years afterward. Many family members en-
counter frustration, struggling with their in-
tense desire to help the person with brain in-
jury recover quickly and completely. Helping
uninjured family members adjust, cope, and
resume normal lives is a formidable chal-
lenge. Finally, many family members strive for
normalcy, yearning for their former lives. Al-
though there are commonalities, families dif-
fer in the extent to which they face and over-
come each of these challenges. Clinicians are
encouraged to recognize the uniqueness of
each family and each family member.
Intervention can be more effective when
clinicians appreciate eight important guiding
assumptions:
1. Brain injury causes drastic life changes
for all family members.
2. Most people want their old life back.
3. Well-informed people do better.
4. Every family member deserves respect.
5. Every person in the family is important.
6. Each adult family member has the right
to make choices, good or bad.
7. In the long term, the family ends up tak-
ing most of the responsibility for helping
the survivor.
8. Family members must take care of them-
selves to effectively help others.
Implementation
The BIFI begins with assessment, a contin-
uing process that necessarily serves as the ba-
sis of treatment. Depending on the setting and
situation, assessment may be quantitative and
qualitative, relying on a combination of record
reviews, interviews, observations, and stan-
dardized assessment tools. Self-assessment is
also encouraged by asking family members to
review and respond to questionnaires, either
in writing or during the course of discussions.
Brain Injury Family Intervention 351
Assessment enables the clinician to gain an
understanding of:
• Patient’s injury or illness and their course
of recovery
• Patient’s psychological, neuropsychologi-
cal, and neurobehavioral functioning
• Family members’ emotional well-being
• Family members’ and patient’s coping
and problem-solving strategies and their
effectiveness
• Family history and cultural dynamics
Readers are referred to chapters by Muir
et al26–29 for a comprehensive discussion of
family assessment techniques.
Treatment begins with a series of steps.
First, the most appropriate modality or modal-
ities are selected. Second, a time frame for
intervention is developed based on practical
considerations such as time remaining before
discharge, financial considerations, and per-
sonal schedules. Third, discussions are held
with family members to identify goals and
priorities. The status of goals and priorities
should be reexamined regularly during the
course of intervention, allowing opportunity
for revisions. Patients’ wishes should be con-
sidered and addressed regardless of their de-
gree of participation in the therapy process.
Severe neurobehavioral difficulties may chal-
lenge clinicians’ ability or willingness to con-
sider survivors’ input and support their right
to make personal decisions.
Intervention modalities
The BIFI can be implemented using a vari-
ety of modalities that differ in regard to the
role of treatment providers, the identity of re-
cipients, the duration of therapy, and the pri-
mary objectives.26–29 The willingness of fam-
ily members to participate, the severity of
patients’ neurobehavioral problems, individ-
ual distress levels, and the nature of identi-
fied problems affect therapy modality choice.
Practical issues such as the availability of trans-
portation and the need to coordinate multiple
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
352 JOURNAL OF HEAD TRAUMA REHABILITATION/AUGUST 2002
schedules also influence modality choices.
Family members can choose to participate in
one or more therapy modality, depending on
their needs and desires. Following are descrip-
tions of the most commonly used modalities.
Family therapy
Family therapy typically involves the per-
son with the brain injury and several family
members. The approach is often effective for
soliciting information about feelings, dissem-
inating information, and encouraging group
problem solving and support.
Marital therapy
Marital therapy includes the person with
the brain injury and the spouse or the parents
of a child with a brain injury. Therapy objec-
tives frequently include improving communi-
cation, empathy, and mutual support. Marital
therapy is ideal for addressing relationship is-
sues and concerns of couples that are uncom-
fortable discussing issues with children or ex-
tended family members.
Individual therapy
Individual therapy often involves the sur-
vivor’s primary caregiver. The individual ap-
proach may be the most conducive to the dis-
cussion of highly sensitive, personal issues.
Group therapy
Group therapy often involves family mem-
bers from different families and facilitates
learning from interactions, feedback, and rec-
ollections of others’ experiences. Meetings
can be organized specifically to provide edu-
cation, referral, support, or skill-building op-
portunities. The participation of persons with
brain injury may or may not be encouraged.
Bibliotherapy
Bibliotherapy often serves as a complement
to other modalities and is perhaps the most
commonly provided family therapy modality.
Participants receive information written by
professionals, persons with brain injury, or
other family members. Bibliotherapy is rela-
tively inexpensive, and literature is available
to address a wide variety of topics.
The BIFI provides a practical framework
for effectively helping families through re-
flection, problem solving, skill building, and
learning from the experience of successful
survivors and their families. Priority setting
and organizational strategies and critical adap-
tive skills are taught and encouraged. Well-
suited to inpatient and outpatient treatment
programs, the BIFI is easily adapted for use
with support groups. Flexibility is very impor-
tant, and therapists are encouraged to select
and focus on issues most relevant to the fami-
lies in their setting.
The BIFI curriculum
Research and clinical experience have
taught us that families differ widely in their
reactions. Yet many families encounter a com-
mon set of four major issues, concerns, and
challenges (see Table 1). Early after injury fam-
ily members often find themselves confused
about neurobehavioral changes. Helping fami-
lies recognize and cope with changes is an im-
portant first step in the therapeutic process.
Family members often have grave concerns
about the future and the likelihood of com-
plete recovery. Teaching about the course of
recovery and methods to promote recovery is
a key element of intervention. With the long-
term consequences of brain injury comes the
potential for severe, long-term stress. Help-
ing families master stress management tech-
niques is critical to their adjustment and abil-
ity to function capably as members of the re-
habilitation team. Family members often find
themselves overwhelmed, confused, and un-
certain in their interactions with profession-
als and others who offer help. Teaching fam-
ily members about their rights and enhancing
their communication skills enables them to
work more effectively with rehabilitation
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0

Brain Injury Family Intervention 353

Table 1. The brain injury family intervention curriculum

I. Recognizing and coping with changes

Help family members . . .
1. Understand the typical consequences of brain injury
2. Recognize ambivalent feelings and develop strategies for positive coping
3. Recognize the brain injury happens to the whole family
4. Recognize the detrimental affects of guilt and the need to care for one’s self
II. Understanding and promoting long-term recovery
Help family members . . .
5. Appreciate the natural limits of rehabilitation
6. Help to extend improvement well beyond the first 6 months
7. Avoid giving inconsistent or contradictory advice
8. Understand the differences between physical and emotional recovery
III. Effectively managing stress and other problems
Help family members . . .
9. Manage stress more effectively
10. Learn effective ways to judge success
11. Avoid working on too many things at one time
12. Expand support systems
IV. Working effectively with rehabilitation professionals
Help family members . . .
13. Recognize and address gaps in the system of care
14. Encourage communication and asking questions
15. Politely address disagreements
16. Resolve conflicting advice and information

Source: Reprinted with permissions from J. Kreutzer and S. Kolakowsky-Hayner, Getting better (and better) After brain
Injury: A Guide for Family, Friends, and Caregivers, pp. 159–184. °
c 1999, The National Resource Center for Traumatic
Brain Injury, Richmond, Virginia.

professionals. Clinicians can help by teaching
family members how to communicate with
others about the injury, ask for help, and avoid
the pitfall of blaming others.
Depending on the treatment setting and
family members’ needs, clinicians can choose
to present the BIFI curriculum in a variety of
ways. Most clinicians are likely to select a sub-
set of topics, which can be organized around
one or more themes or goals. This approach is
nicely suited for traditional family therapy, as
well as structured family education and sup-
port groups. Presentation and discussion of
the entire curriculum is perhaps best suited
for group therapy or long-term family inter-
ventions. Focusing on a single topic may be
most practical when therapy is limited to a
few sessions, such as in crisis intervention or
case consultation.
Clinicians are encouraged to provide fam-
ily members with copies of the curriculum
and self-assessment tools as needed. Family
members may review materials and complete
assessments in advance of, during, or after
therapy sessions. Family members may ben-
efit from discussing their self-assessment re-
sponses and reactions to written materials
outside of therapy sessions. Practicing skills
and testing solutions to problems should also
continue beyond therapy sessions. Following
are descriptions of the intervention topics and
self-assessment tools.
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
354 JOURNAL OF HEAD TRAUMA REHABILITATION/AUGUST 2002
RECOGNIZING AND COPING
WITH CHANGES
Topic 1. Understand the typical
consequences of brain injury
Family members typically describe feeling
anxious, confused, and overwhelmed soon
after the survivor’s injury. Research indi-
cates that their emotional distress is closely
linked to the drastic changes in patients’
personality and behavior.1,2 Helping family
members systematically identify injury-related
neurobehavioral problems is important to
helping them understand their emotional
changes. As a first step in the BIFI, family
members are asked to complete the Brain In-
jury Problem Checklist (BIPCL),30 which en-
ables them to identify the injured person’s
physical, cognitive, emotional, behavioral,
social, and communication problems. Alterna-
tives to the BIPCL include the Neurobehav-
ioral Functioning Inventory31–33 and the Com-
munity Integration Questionnaire.34–37
Written checklists and questionnaires ad-
dressing neurobehavioral changes have im-
portant advantages. Family members can
complete forms in advance of appointments,
allowing them an opportunity to reflect on
and identify changes. Responses of differ-
ent family members can be compared easily
and forms can be readministered, allowing
assessment of change over time. Once neuro-
behavioral problems are identified, clinicians
can educate the family about the nature of the
problems, normalize problems, and develop
a treatment plan that involves collaboration
with family members.
Topic 2. Recognize ambivalent feelings
and develop strategies for positive
coping
The emotional and personality changes that
follow brain injury are often described as
unpleasant and unwelcome. Making matters
worse, many family members get upset with
themselves because they develop negative
feelings toward the person with the injury.
The mixture of positive and negative feelings
can contribute to feeling overwhelmed. The
BIFI uses a three-step approach to address am-
bivalence and negative feelings. The first step
is a self-assessment process that helps fam-
ily members identify both negative and pos-
itive feelings toward the person with brain
injury (see Appendix A). The second step in-
volves normalizing and teaching the family
that mixed feelings are a natural consequence
of caring for a person whose behavior is chal-
lenging. Finally, family members are taught
problem-solving strategies and given specific
suggestions to better the situation. Practical
suggestions may include:
• Ignoring your negative feelings probably
will not help. Try to recognize where
your feelings come from. Recognize that
you have positive feelings as well.
• Recognize that feeling guilty, feeling
ashamed, or being upset with yourself or
the way you feel is natural but will not
make things better.
• Do not blame yourself and try not to
blame other people. This situation came
about because of the injury, not because
of you.
Topic 3. Recognize that brain injury
happens to the entire family
Professionals provide intensive care dur-
ing acute hospitalization and rehabilitation.
After discharge, family members are called
on to provide assistance with tasks including
dressing, cooking, taking medications, and
managing finances. Many take on the role
of transportation coordinator, chauffeur, and
personal assistant. Taking on new responsibil-
ities is challenging, particularly when they are
substantial, unexpected, and added to exist-
ing responsibilities.
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
So much attention is given to the person
with the injury that family members have a
tendency to forget about themselves.24 They
can benefit from learning that the injured per-
son is not the only one whose life has been
drastically changed by the injury. The BIFI
helps family members recognize change in
two ways. First, family members are given de-
tailed information about changes in roles and
responsibilities commonly reported by oth-
ers. Second, they are asked to identify changes
by completing the open-ended Family Change
Questionnaire (see Appendix B).
Topic 4. Recognize the detrimental
affects of guilt and the need to care
for one’s self
Guilt is a natural reaction to seeing a fam-
ily member hurt, wanting to relieve the pain,
and not being able to stop the suffering.
Guilty feelings lead family members to overex-
ert themselves on behalf of the person with
the injury. Helping people to understand that
guilt comes from frustration and negativity
and that caring and maintaining a positive at-
titude will facilitate the survivor’s progress
is crucial to recovery. Family members’ abil-
ity to care for the patient diminishes as their
strength and ability to think clearly diminish.
The BIFI emphasizes the need for self-
preservation through proper rest, exercise,
eating, and sleeping. Family members are
warned against neglecting the needs of un-
injured family members, especially children,
and are encouraged to ask others for help.
Clinicians should let family members know
that asking for help is not a sign of weakness,
but a sign of good judgment and recognition
of normal human limitations. The BIFI pro-
vides the following list of practical self-help
suggestions to alleviate guilty feelings and the
sense of being overwhelmed:
1. Ask other people to take on some of your
responsibilities at home and caring for
the patient.
Brain Injury Family Intervention 355
2. Avoid taking on new responsibilities, es-
pecially at work.
3. If you take on new responsibilities, make
sure to give up some of your old respon-
sibilities.
4. Seek and find additional sources of emo-
tional support from family members,
friends, professionals, and other families
with similar experiences.
5. Remember your personal needs and in-
volve yourself in activities you enjoy.
6. To help you remain strong and focused,
take breaks from helping even for a few
hours or a few days; encourage friends
and other family members to spend time
with the survivor.
7. Seek and find additional resources of
help for your injured family member.
UNDERSTANDING AND PROMOTING
LONG-TERM RECOVERY
Topic 5. Appreciate the natural limits
of rehabilitation
Family members are often presented with
glossy rehabilitation program brochures and
hear stories of miraculous improvement. Op-
timism about the benefits of rehabilitation
and hopes for complete recovery can be
stirred by tours of modern medical facili-
ties with impressive technology. Some family
members begin to believe that, if they could
just find the right program, recovery would be
assured.
Family members do best when they rec-
ognize the limitations and benefits of reha-
bilitation. Unreasonable expectations can add
to despair and frustration. The BIFI teaches
family members that rehabilitation can lead
to improvement. However, participation in
even the best programs does not guarantee
that the injured person will be “fixed” for life.
People are taught that persons with brain in-
jury change over time and that change is a
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
356 JOURNAL OF HEAD TRAUMA REHABILITATION/AUGUST 2002
normal part of life. For example, as people
get older, nutritional and health care needs
change along with physical capabilities. Re-
lationships change for the better or worse.
Friends and family members once able to help
may not be available. People move from one
home to another, settling into a different phys-
ical environment. The responsibilities of the
person with the injury will change if they
move, take on a job, or return to school. As
people change over time, their need for reha-
bilitation changes as well.
Topic 6. Help to extend improvement
well beyond the first 6 months
Early after injury, family members often
question doctors and therapists about what to
expect regarding the injured person’s recov-
ery. The most common questions begin with
“when.”However, most professionals have dif-
ficulty knowing exactly when things are go-
ing to happen. Family members are usually
told that recovery occurs most rapidly 3 to 6
months after injury.
Family members frequently become dis-
heartened when neurobehavioral problems
continue well beyond 6 months after injury.
Discouragement can become overwhelming
when there seems little likelihood that life will
return to normal. Clinicians can help family
members maintain a positive perspective on
the future by teaching them goal setting, prob-
lem solving, and other skills. The BIFI curricu-
lum helps family members learn:
• Everyone with a brain injury, no matter
how severe, has the ability to learn and
benefit from experience
• Most people get better with practice and
training, including mental and physical
exercise
• Giving up bad habits (e.g., quitting smok-
ing and eating junk food) will make for a
better recovery
• When and how to ask for help from other
people
• How to focus on the patient’s primary
goals, monitor progress, and stick with
plans that work
• What works for other people and how to
listen to their ideas
• How to give the survivor constructive
feedback and solicit feedback from others
• How to stop doing things that do not
work
Topic 7. Avoid giving inconsistent
or contradictory advice
Family members can unwittingly worsen
problems by giving the person with brain in-
jury very different advice. For example, a fa-
ther may tell his injured son that all he needs
to do is try harder and he will be better, while
the mother tells the son he needs more rest to
build up his strength. Differing advice can in-
crease conflict, stress, frustration, worry, and
confusion. Conflicting advice can lead sur-
vivors to believe that they are misunderstood
or cannot do anything right.
The BIFI curriculum emphasizes the ben-
efits of teamwork among family members in
the pursuit of common goals. Family mem-
bers are taught the dangers of and how to
avoid giving conflicting advice. For exam-
ple, before giving advice, family members are
taught to ask the patient what others have
suggested. Discussing differing viewpoints,
reaching consensus, and trying one approach
at a time are encouraged. Family members are
reminded that there is often more than one
solution to a problem, and more than one per-
son may be right. In addition, they are encour-
aged to cooperate, avoid arguments, and re-
spect each other’s opinion.
Topic 8. Understand the differences
between physical and emotional
recovery
Family members typically have difficulty
separating physical and emotional recovery.
Physical recovery focuses on repairing the
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
body and is usually taken care of while
the patient is hospitalized. However, emo-
tional recovery focuses on feeling good about
one’s self and one’s life and often requires
long-term healing. Understanding a few basic
ideas about physical and emotional recovery
can help family members and survivors feel
better.
The BIFI encourages clinicians to incorpo-
rate the following key points when educating
family members about recovery:
• Physical recovery is usually faster than
emotional recovery.
• Although family members may not be
physically injured, they often experience
emotional pain.
• People show their emotions differently
(e.g., crying, anger, excessive sleeping).
• Recovery does not always move forward;
setbacks can and do occur.
• New problems and stresses often oc-
cur, adding to the challenge of emotional
recovery.
EFFECTIVELY MANAGING STRESS AND
OTHER PROBLEMS
Topic 9. Manage stress more effectively
Family members are vulnerable to the neg-
ative effects of stress while dealing with the
survivor’s injury and added responsibilities.
The effects of stress can accumulate over time
and make it difficult to handle new challenges.
Overwhelmed family members may fail to re-
alize how much stress they are actually fac-
ing. Recognizing stress is an important step
toward effective stress management, a means
of reducing the risk of emotional collapse.
The BIFI uses The 13 Item Stress Test (see
Appendix C) to help family members identify
stress levels.
Family members’ life quality depends con-
siderably on the effectiveness of their stress
management skills. The BIFI incorporates two
Brain Injury Family Intervention 357
basic stress management approaches. First,
family members are asked to identify person-
ally effective and ineffective stress manage-
ment techniques using the Stress Management
Worksheet (see Appendix D). The worksheet
can be completed at home or in the clinician’s
office. Responses are discussed and reviewed
with the clinician and other family members.
Second, detailed written information about
stress management techniques is provided.30
Derived from family members reports about
effective strategies, the BIFI delineates 11
stress management approaches as listed in the
following.
• Take breaks often.
• Make a list of what you need to do in the
short-term and long-term, and set priori-
ties.
• Set reasonable goals and expectations.
• Learn and apply negotiation skills.
• Learn and use relaxation techniques.
• Tell yourself things that will help.
• Avoid pushing yourself too hard and
putting yourself down.
• Ask for help.
• Common sense strategies can help you be
strong.
• Have a backup plan.
• Recognize that life has many challenges.
For effective stress management, clinicians
teach family members a sequential process.
First, family members identify the approaches
most likely to be personally effective. Sec-
ond, clinicians teach them to apply the ap-
proaches in everyday life. Third, clinicians
help them evaluate and distinguish between
effective and ineffective approaches. Finally,
family members are helped to refine the ap-
plication of the most effective approaches.
Topic 10. Learn effective ways
to judge success
Family members often have a difficult time
judging progress. Continually judging the per-
son with the injury compared with how they
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
358 JOURNAL OF HEAD TRAUMA REHABILITATION/AUGUST 2002
were before the injury can bring on disap-
pointment. Also, focusing too much on what
needs to be done can easily cause people to
lose sight of what has been accomplished.
Progress can be very slow. Slow changes are
harder to recognize, especially when they see
the person daily. Progress typically requires
considerable sustained effort. Family mem-
bers may not remember or think about how
things were when the patient was first in
the hospital. A sense of loss and feeling over-
whelmed increases the difficulty of accurately
judging progress. Finally, family members oc-
casionally take one or two steps back after tak-
ing two steps forward.
The BIFI teaches family members that judg-
ments of progress are a function of perspec-
tive, a point of view. Family members are
helped to develop a fair and positive perspec-
tive by seeking and carefully evaluating infor-
mation. People are encouraged to appreciate
the progress that’s been made since the ini-
tial injury. Asking other family members and
friends about the progress they’ve noticed is
recommended. Family members are also ad-
vised to solicit professionals’ opinions about
progress. Professionals’ opinions may be more
accurate, because they have access to records
and rely on standardized assessment tools.
Topic 11. Avoid working on too many
things at one time
Family members have many goals and prob-
lems to work on. Unfortunately, facing more
than one pressing task increases the like-
lihood of overcommitment. Taking on too
many responsibilities also leads to frustration,
stress, and inefficiency.
To improve coping and problem-solving ef-
ficiency, the BIFI discourages family members
from being overly self-critical. They are re-
minded that they have far more responsibili-
ties now than before the injury and lots of new
sources of stress. Clinicians help family mem-
bers to identify the limits of their capabilities
and to recognize that efficiency diminishes as
responsibilities increase. Family members are
also reminded that emotional well being may
be the greatest casualty of overcommitment.
The BIFI teaches a structured approach to
priority management. To take control of their
lives, family members are instructed to keep a
running list of things to do. They are asked
to assign priority levels ranging from 1 to
10 for each. For example, “1” would indi-
cate the highest priority and a “10” would be
the lowest. Then they are taught to work on
the highest priority first. Completed tasks are
checked off, and tasks that are not completed
are moved to the next day’s list. To help family
members monitor progress and develop rea-
sonable expectations, priorities are reexam-
ined, and the list is reorganized on an ongoing
basis.
Topic 12. Expand support systems
Family members come to rely on health
care professionals and one another for guid-
ance and support, particularly during the
acute phase of recovery. However, many of
the challenges encountered are long term and
occur well after the initial support system
diminishes. The BIFI curriculum encourages
participation in support groups. Participation
is often more beneficial than people expect or
realize. Support groups provide good oppor-
tunities for families to meet others who face
similar issues and are trying to overcome the
same challenges. Concern expressed by oth-
ers is reassuring and comforting, and family
members benefit from knowing that they are
not alone. Family members also learn about
resources and share ideas about managing
problems.
On the other hand, clinicians need to recog-
nize and acknowledge the source of family
members’ misgivings about support group
participation. Support group members may
experience heightened fears, discourage-
ment, and confusion when they learn: (1) a
medicine, therapy, or doctor helped other
people but not their family member; (2) other
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
family members struggle with very different
problems or problems that are not as severe;
(3) resources available in many communities
or programs are not available to the survivor;
and (4) somebody else who is like their
injured family member has developed very
serious problems they haven’t noticed. To
alleviate misgivings and enhance family
support group benefits, the BIFI helps people
understand:
• Every person, injured or not, is physiolog-
ically and emotionally different.
• Many factors, including current age, age
at time of injury, personality, attitude,
availability of support, and level of access
to medical care explain differences in out-
come and responses to treatment.
• Support groups are better used for shar-
ing ideas and experiences than for dis-
pensing advice about medical care.
• When others talk about solving their per-
sonal problems, recognize the similarities
and differences between your situation
and theirs.
WORKING EFFECTIVELY WITH
REHABILITATION PROFESSIONALS
Topic 13. Recognize and address gaps
in the system of care
After discharge from the hospital, family
members often search for rehabilitation pro-
grams and services to complete the survivor’s
recovery and ensure the best outcome. Un-
fortunately, few communities have specialized
programs to address the long-term needs of
persons with brain injury. Limited availability
of local rehabilitation services is a source of
great frustration, particularly for people living
in rural areas.
The BIFI uses several strategies to reduce
family members’ frustration. First, family
members are advised that the lack of resour-
ces is not their fault. Being angry with them-
selves, agencies, and professionals is unpro-
ductive. Second, they are taught to be proac-
Brain Injury Family Intervention 359
tive and creative, redirecting their energy
toward effective problem solving. Recom-
mended strategies include the following:
• Getting ideas from people who have been
successful at finding services and improv-
ing their situation. Local support groups
and chapters of the Brain Injury Associa-
tion are good resources.
• Contacting organizations that provide ser-
vices to people with other types of dis-
abilities. Consider whether the program
can be adapted to meet your needs. Nego-
tiate with service providers and encour-
age them to make adjustments.
• Advocating for new or better services.
Get together with other families and sur-
vivors in your community whose needs
are similar. Work together to educate the
public and local organizations about the
special needs of people with brain in-
jury. Educate lawmakers and policy mak-
ers about the benefits of improved com-
munity services.
Topic 14. Encourage communication
and asking questions
Family members often hesitate to ask health
care professionals questions. Many feel that
the doctor has more important things to do,
that the doctor will have less time to evalu-
ate and the treat the patient if questions are
asked, or that asking questions will make the
doctor think they are not trusted. They may
also fear looking foolish. The BIFI teaches fam-
ily members that asking questions is not only
acceptable but also necessary for the good
of the survivor. Understanding problems and
available treatments helps in long-term plan-
ning, and greater improvement means that the
family will likely depend less on others in the
future.
Family members should not expect that all
questions will be answered immediately. They
may be referred to another staff member,
book, or organization. Using the worksheet,
Questions to Ask at Our Next Therapy or
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
360 JOURNAL OF HEAD TRAUMA REHABILITATION/AUGUST 2002
Doctor’s Appointment,30 family members are
instructed to:
• Compile a list of questions to be an-
swered, who to ask, and the response re-
ceived.
• Add to the list as questions arise.
• Keep the list organized (e.g., in a note-
book) and in a safe place.
• Bring the questions to appointments with
health care professionals.
• Write down the answers when they get
them.
The worksheet helps family members orga-
nize their ideas and questions before appoint-
ments, so their time with professionals is used
efficiently.
Topic 15. Politely address disagreements
Family members spend a great deal of time
trying to understand the person with the in-
jury and the challenges they face. Acutely
aware of problems, family members attempt
to find and offer solutions. Their experience
allows them to discover what does and does
not work. Health care providers, with spe-
cial expertise and training, may have differ-
ent opinions about the survivor’s needs and
treatment.
The BIFI helps family members develop the
skills needed to disagree with professionals
and to maintain a positive working relation-
ship. Instructions are given to:
• Politely offer the information you have or
think is important.
• Realize that how the information is of-
fered will determine how it is received;
a positive approach, giving the informa-
tion in the spirit of helping, will be most
effective.
• Describe family members’ uncomfortable
feelings as “concerns that may or may not
be realistic.”
• Ask the professional’s opinion about in-
formation and what it means for treat-
ment.
• Acknowledge the professional’s expertise
and recognize the limits of family mem-
bers’ medical expertise.
• Acknowledge that everyone involved
wants to help the patient.
• Show the same respect for the profes-
sional as family members would like to
have shown to them.
• Avoid insulting or threatening the profes-
sional if he or she does not agree with
family members.
Topic 16. Resolve conflicting advice and
information
Family members often report receiving in-
consistent or contradictory information and
guidance from health care professionals. In-
consistencies appear, because survivors differ
greatly from one another; the science of re-
habilitation is in its infancy; many problems
do not have clear-cut solutions; and profes-
sionals vary in their level of experience, train-
ing, and preferred techniques. Observing a pa-
tient’s behavior in different settings can lead
providers to develop different views. Also,
professionals vary in their approach to pre-
senting information; some prefer optimism,
whereas others are more cautious.
To enhance teamwork, consistency, and ef-
ficiency, the BIFI helps family members de-
velop the skills they need to communicate ef-
fectively with health care professionals. Fam-
ily members are instructed to:
• Give professionals detailed information
about the family situation and the patient.
• Inform professionals about what is spe-
cial or unusual about the family situation
and the person with the injury.
• Explain yourself and make certain that
your questions are properly understood.
• Repeat or paraphrase responses you get
to make certain that you understand what
you have been told.
• Give each professional an adequate op-
portunity to explain himself or herself.
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0
Remember that asking questions of peo-
ple “on the run” can get you incorrect or
incomplete responses.
• Encourage discussion between profes-
sionals who offer different opinions to
correct misinformation and help resolve
inconsistencies.
DISCUSSION
The BIFI can be delivered using a variety
of treatment modalities. The curriculum is
easily adapted for individual therapy, group
therapy, family therapy, and marital therapy.
When bibliotherapy is an important treat-
ment component, clinicians are encouraged
to provide a copy of the workbook detail-
ing the BIFI, Getting Better and Better after
Brain Injury: A Guide for Families, Friends,
and Caregivers.30 Selected components of
the curriculum can be especially helpful for
crisis intervention.
The willingness of family members to par-
ticipate, the severity of patients’ neurobehav-
ioral problems, individual distress levels, and
the nature of identified problems most often
guide clinicians’ choice of therapy modality.
Practical issues such as the availability of trans-
portation and the need to coordinate mul-
tiple schedules can also influence modality
choices. Family members can choose therapy
modalities on the basis of their needs and
desires.
The limitations of the BIFI should be ac-
knowledged. The curriculum was developed
on the basis of review of the literature, con-
sideration of clinical experience, and con-
sultation with many family members and
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Brain Injury Family Intervention 361
treatment providers. Clinical observation and
feedback from family members and clinicians
has been positive. Nevertheless, the approach
has not been empirically validated. Research
using standardized family and psychological
assessment tools is needed to evaluate the
benefits of treatment for families with varying
compositions, problems, and situations. Fur-
thermore, the BIFI curriculum does not ad-
dress all topics relevant to families affected by
brain injury. Clinicians are encouraged to dili-
gently explore and address other issues and
concerns accordingly.
Reliability and validity studies comparing
BIFI self-assessment tools with standardized
family assessment measures are needed. For
now, the BIFI self-assessment tools are most
useful when complemented by traditional as-
sessment procedures. Before seeing families,
clinicians are encouraged to thoroughly re-
view records and consult with other profes-
sionals involved in treatment. Initial assess-
ment should include detailed interviews and,
where feasible, standardized measures of psy-
chological functioning, quality of life, and fam-
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364 JOURNAL OF HEAD TRAUMA REHABILITATION/AUGUST 2002

Appendix A
“Do I have Mixed Feelings about the Person with
the Injury?” Questionnaire
Directions: Circle “Yes” or “No” for each of the items below that accurately describe how your
feelings have changed about the injured person.
Yes No I like my family member less.
Yes No I love my family member less.
Yes No I don’t enjoy spending time with my family member as much.
Yes No I’ve found more things to dislike about my family member.
Yes No I’m more afraid of him or her.
Yes No I find myself getting more upset around them.
Yes No I get angry with him or her more often.
Yes No There are many times when I don’t want to be around him or her.
Yes No I don’t like him or her any more.
Yes No The more time I spend with him or her, the less I like being around him or her.
Yes No I can’t stand being in the same room with him or her.
Source: Reprinted with permissions from J. Kreutzer and S. Kolakowsky-Hayner, Getting better (and better) After brain
Injury: A Guide for Family, Friends, and Caregivers, pp. 159–184. °
c 1999, The National Resource Center for Traumatic
Brain Injury, Richmond, Virginia.
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0

Brain Injury Family Intervention 365

Appendix B
The Family Change Questionnaire
1. How did you feel when you first learned that the patient was injured?

2. How did you feel when you realized that the patient was going to live?

3. How did you feel when you began to recognize that the brain injury may have long-term
effects?

4. How have other family members reacted to the patient’s injury?

5. Have you made yourself available to provide more emotional support to the patient and
other family members?

6. Before the brain injury, what were the most important plans you had for your future and
your family’s future?

7. How has the brain injury affected your plans for the future?

8. What responsibilities do you now have to care for the patient?

9. Do you help the patient get back and forth to appointments?

10. Do you attend therapy and doctors’ visits with the patient?

11. Do you help the patient with filling out insurance, registration, medical, and disability
forms?

12. Do you help the patient get authorizations for medical and rehabilitative care?

13. Have you taken over responsibilities from the patient or uninjured family members?

14. What new responsibilities do you have related to caring for the house, maintaining
the car(s), working, paying bills, and caring for children?

15. Have you had to cut back on your work hours so that you could help the patient?

16. How has your family’s income been affected by the injury?

17. What new expenses are you facing because of the injury?

Source: Reprinted with permissions from J. Kreutzer and S. Kolakowsky-Hayner, Getting better (and better) After brain
Injury: A Guide for Family, Friends, and Caregivers, pp. 159–184. °
c 1999, The National Resource Center for Traumatic
Brain Injury, Richmond, Virginia.
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0

366 JOURNAL OF HEAD TRAUMA REHABILITATION/AUGUST 2002

Appendix C
The 13 Item Stress Test
1. True False I have a lot to do.
2. True False I have more to do than I can handle.
3. True False I’m not being productive.
4. True False I’m trying really hard but getting nothing done.
5. True False I’m feeling unhealthy.
6. True False I can’t afford to take breaks or time off.
7. True False I’m pushing myself too hard.
8. True False I don’t sleep very well.
9. True False Too many people are telling me what to do.
10. True False I am not treating people the way I want to be treated.
11. True False I feel totally exhausted.
12. True False Nobody is happy with what I do.
13. True False I can’t stand living like this.
Scoring: the more True responses you circle, the greater the pressure you’re feeling.
Source: Reprinted with permissions from J. Kreutzer and S. Kolakowsky-Hayner, Getting better (and better) After brain
Injury: A Guide for Family, Friends, and Caregivers, pp. 159–184. °
c 1999, The National Resource Center for Traumatic
Brain Injury, Richmond, Virginia.
Aspen Pub./JHTR AS124-07 June 14, 2002 15:4 Char Count= 0

Brain Injury Family Intervention 367

Appendix D
The Stress Management Worksheet
1. What are the main sources of stress in my life?

2. What do I do now that helps me manage stress effectively?

3. What do I do now that makes it harder to manage stress?

4. What can I do to better manage stress?

5. Where should I start to make things better?

Source: Reprinted with permissions from J. Kreutzer and S. Kolakowsky-Hayner, Getting better (and better) After brain
Injury: A Guide for Family, Friends, and Caregivers, pp. 159–184. °
c 1999, The National Resource Center for Traumatic
Brain Injury, Richmond, Virginia.