INTRODUCTION
Awareness deficits are common after brain injury. Such deficits
are evidenced in a number of ways, including (1) denial that
deficits exist (2) behavior that is grossly and frequently at odds
with stated personal goals, including rejection of help, and (3)
repeating an ineffective behavior despite negative consequences.
Awareness deficits are important setting conditions for maladaptive
behaviors. They strip the individual of the ability to predict the
consequences of actions, to avoid negative consequences, to learn
from experience, and ultimately, to meet basic needs and attain
personal goals. Awareness deficits place the individual at the mercy
of their basic impulses and make them likely to repeat maladaptive
behavior patterns indefinitely unless intervention is effective in
altering the pattern.
Cognitively impaired individuals with challenging behaviors may not
benefit from traditional counseling due to difficulties processing,
integrating, retaining, and applying new information that are common
after brain injury. However, it is known that cognitively impaired
individuals may be able to benefit from feedback that promotes
insight and better self-control if the information is provided and
reinforced repetitively in overlapping oral, written, and graphic
presentations.
The term "Social Stories™" was created and trademarked
by Carol Gray, an educator known for her work with autistic spectrum
disorders 1. Social Stories™ are narratives written from the
subject's point of view, that describe social situations that are
challenging for them, including effective ways of managing such
situations. The intent is to share social information that the
individual may be lacking, a lack that may contribute to if not
cause maladaptive social behavior. The approach is widely used with
children who exhibit autistic spectrum disorders as a means of
promoting the development of social skills and reducing challenging
behaviors.
Presenting new information redundantly, in several modalities, and
collaboratively created instructional narratives, outlines, and
representational diagrams are fairly common practices in the field
of brain injury rehabilitation. The purposes are typically to
promote self-awareness, to facilitate disability education, or to
support self-expression and self-advocacy skills. Until encountering
Carol Gray's work1, we had not thought to use a narrative approach
specifically to reduce challenging behaviors.
METHOD
Narratives are constructed by speech-language pathologists,
occupational therapists or social workers based on their knowledge
of the subject's circumstances. The narratives include a description
of the challenging behavior(s) and a suggestion for an effective way
of handling difficult situations. This information is typically
preceded with basic personal biographical information and selected
clinical facts about the injury and rehabilitation program, in order
to establish a better conceptual context for the behavioral issues.
Each narrative is individually created and designed primarily to
appeal and communicate with the subject, taking into account their
personality, manner of expression, differences in information
processing and reading ability, personal preferences, and personal
sensitivities. The narratives are created first by the clinician and
subsequently reviewed and revised as necessary with the subject. All
are written in the first person, from the subject's perspective, and
with an attempt to convey a positive outlook toward rehabilitation
and toward the individual's life in general.
The treatment procedure is simple. The individual is encouraged to
read the narrative. Assistance is given so that the reading is
fluent and expressive in order to emphasize meaning and facilitate
comprehension. If the individual is unable to read the narrative, it
is read to him or her.
While none of the clinicians have formal training in creation of
therapeutic narratives, all are licensed and experienced clinicians
and have been made aware of Ms. Gray's excellent public website1 and
encouraged to incorporate the guidelines for creating Social Stories™
that are referenced there. The primary clinician typically consults
with the social worker to assure accuracy of biographical
information and with psychology staff if there are concerns
regarding the emotional impact of particular facts.
The individual is determined to be an acceptable candidate for the
approach if they accept the procedure. If and when the most
challenging behaviors are stabilized, we try to establish higher
degrees of internalization of the information and greater
collaboration in the creation of the scripts themselves.
Deeper internalization is attempted by gradually fading text, first
by eliminating more and more key words that the subject is asked to
supply from memory, and then by fading the narrative altogether in
favor of a detailed outline. Finally, the detailed outline is faded
in favor of a key word outline, if the individual is able to wean
from written word cues.
OVERVIEW OF RESULTS
Our results indicate that therapeutic narratives are a useful
adjunct to the treatment of neurobehavioral disorders. Significant
decreases in target behaviors; improvements in mood, acceptance of
help, and increased willingness to participate in rehabilitation
have been noted in virtually all subjects who were willing to
cooperate with the procedure.
Case illustrations are attached.
ABOUT NORTHEAST CENTER FOR SPECIAL CARE
Northeast Center for Special Care is a 280 bed, transitional
brain injury rehabilitation center devoted to the recovery,
rehabilitation and community reentry of individuals with severe
neurological impairments, in particular, those resulting from
acquired brain and spinal cord injury. Northeast Center for Special
Care is licensed as a skilled nursing facility but provides a number
of specialty services that are unusual for this setting, including a
ventilator-weaning program, an intensive neurobehavioral
rehabilitation program, and a specialized, multi-disciplinary brain
injury rehabilitation program that utilizes both traditional and
alternative therapies in a therapeutic community context. More
information can be obtained by visiting the Northeast Center for
Special Care web site at www.northeastcenter.com
REFERENCES
1. Carol Gray's Web-site: http://www.thegraycenter.org/socialstories.cfm
2. Journal of Applied Behavior Analysis, Number 4, Winter 2001
Pages 425-446
3. Journal of Positive Behavior Interventions, Volume 4, Number
1, Winter 2002 Pages 53-602
CASE ILLUSTRATIONS WITH THERAPEUTIC NARRATIVES
NOTE:
Identifying information has been altered or eliminated to
protect confidentiality.
#1. MD
MD is a 47 year old male who is 29 years status post brain
injury resulting from an MVA. He is independently mobile in a manual
wheelchair. He is semi-independent with basic Activities of Daily
Living (ADL’s) has poor Independent Activities of Daily Living (IADL)
abilities, limited self-awareness, and no clear personal goals.
Challenging behaviors were of longstanding and included yelling,
cursing, demanding cigarettes and coffee, verbal threats of
violence, and occasional physical aggression. These behaviors also
prevented rehabilitation efforts. One or several of these behaviors
occurred on virtually a daily basis since his admission.
Prior to the use of a therapeutic narrative intervention, MD was
oriented only to person, often spoke in a quasi-delusional manner,
referring to staff as "God," and making other bizarre
statements. He was frequently irritable and participation in general
recreational activities was minimal.
It is noteworthy that MD received rehabilitation services prior to
his admission. His progress in the previous setting had been limited
and the long term prediction at the time he was admitted to
Northeast Center for Special Care was that he would require long
term care, indefinitely, notwithstanding Northeast Center for
Special Care’s commitment to attempt to gain HCBS Traumatic Brain
Injury Waiver through the New York State Office of Mental
Retardation and Developmental Disabilities (OMRDD) approval despite
this.
The therapeutic narrative below was introduced in May of 2004 as
part of an ongoing effort to address behavioral issues reported
above. The narrative was read to D.M. at least once a day by
Para-professional staff. The therapeutic narrative follows.
"My name is (Name). I was born on (Date). It is now the year
2005 and I am 48 years old.
I was born in the town of (Name), New York. My Mother’s name is
(Name) and my Father’s name is (Name). I have a brother named
(Name) and a grandfather named (Name).
When I was 18 years old, I had an accident. I was in a car and it
was hit. I was badly hurt and in a coma for about a year. The most
serious part of the accident was the injury to my brain. Since then,
it has been difficult for me to think clearly, to remember, and to
manage things in my life.
This place is called the Northeast Center for Special Care. It is a
rehabilitation center that I came to on April 8th, 2002. That’s
about 3 years ago. I am here for help to get my life back on track.
What I am most interested in is getting to the point where I can do
things for myself. I have most difficulty with memory, which is why
I am doing this exercise. The purpose of reviewing personal
information about myself is to re-learn it. By the time I finish
with these exercises my goal is to know more about myself than
anybody else does!"
RESULT
MD's result was dramatic. His daily behaviors stopped abruptly
the day after the readings began in May of 2004. The gain noted as
been sustained. Target behaviors occur at the rate of less than once
per month and are easily re-directed. The bizarre delusional
statements are rare. He is now oriented to person and place and has
established a daily activity routine. His participation in
recreational activities has gradually increased and he was recently
re-referred for rehabilitation services. He has been accepted by
OMRDD Traumatic Brain Injury Waiver program and is awaiting
availability of residential services.
#2. BT
BT is a 40-year-old male admitted in November 2004. BT is fully
ambulatory, independent of Activities of Daily Living and without
any significant communicative or physical impairment. He sustained a
brain injury as a result of encephalitis from measles in early
childhood. He completed the 9th grade and then dropped out. He is
single and has no family involvement.
BT has had numerous contacts with community mental health services
and criminal justice throughout his life. There have been several
psychiatric hospitalizations and at least 2 placements in long term
care facilities prior to admission to the Northeast Center. He was
admitted to Northeast Center for Special Care from a neurobehavioral
program in another state. Diagnoses include intellectual impairment
within the mild range of mental retardation, paranoid schizophrenia,
and organic personality syndrome.
He was admitted to Northeast Center for Special Care to undergo
neurobehavioral rehabilitation and to eventually return to the
Community with support provided by the Office of Mental Health.
His critical barriers are considered to be behavioral dyscontrol and
rejection of assistance. He has reduced self-awareness and has very
poor Independent Activities of Daily Living and executive control.
He is clear and consistent about wanting to return to the Community
but his behavior is highly disorganized. Conversation readily shifts
off of an established topic to paranoid thoughts or, variously, to
self-reassurances that "No, no one is going to hurt me. I'm
going to be okay."
Behaviors included frequent threats of physical violence and
menacing gestures alternating with sexual advances on female staff.
There have been several incidences of physical aggression. He tends
to ignore his peers for the most part and avoided all organized
activities when first admitted, spending many hours each day in his
room listening to music at a high volume. Primary treatments
included psychopharmacology, psychotherapy, and occupational therapy
to assist in developing self-awareness and self-management skills,
and therapeutic recreation.
He has required a one to one staff assistant for most of his
admission thus far, to provide guidance and encouragement to attend
programs, and to provide supervision and re-direction. He is
prompted to report to his Social Worker or staff nurse twice daily
to review his behaviors and activity during the previous hours and
to establish a clear plan for the remainder of the day. He took to
this routine quickly and now presents himself for his appointments
without prompting.
The therapeutic narrative was introduced in hopes of establishing a
clear, shared reference regarding his barriers, interventions, and
their relationship to his goals. He reviews the narrative with staff
at least daily, sometimes several times a day.
Note the personal and optimistic tone of the narrative. When he was
first admitted, BT made comments that suggested he sometimes thought
he was in prison--not surprising given his history and state of
confusion.
"My name is (Name). I was born on (Date). I am 40 years old. I
am in a rehabilitation center in upstate New York called the
Northeast Center for Special Care. We are half way between New York
City and Albany.
I have been here at the Northeast Center since November 5th of last
year, so I've been here about (Months).
This is a place for people who have had brain injuries. I’m here
because I had an injury to my brain a long time ago. I had German
measles with an infection that spread to my brain when I was very
young. Since then, I have had problems controlling my behavior for
most of my life. I have spent quite a bit of time in hospitals
because of this.
I went to school up to the 9th grade. Then I dropped out. They tell
me that I must be smart because, even though I didn’t finish
school, I seem to know a lot of things! I remember that once I had a
job delivering papers. I think I would like to have a job again some
day.
The folks here at the Northeast Center for Special Care tell me they
care about me and will try to do everything possible to help me get
better. They say they want to help me move back closer to the City,
IF that is what I want. I DO!
They also tell me they will always be honest with me. They told me
that I have to work on being safe and letting others be safe too. I
have to work on not threatening anyone. I have to work on
controlling my temper. I know that it is unacceptable to threaten
anyone. I know it is unacceptable to hit anyone. The staff here will
keep everyone safe, including me.
This is not a prison. Staff will react to my behavior but they will
not punish me. They will help me get control of my behavior so I can
get out of here some day. They say that I have a good chance of
getting out of here if I can stop threatening others and never hit
anyone...for any reason.
It is a little hard for me to feel safe and to feel like anyone
cares about me. I will try to trust the staff here. I will try to
accept help. I know this is a fresh start. They say they won’t
judge me by my past. They say they know I am a good person and that
they like me and will help me reach my goals. I know that I will
have to do most of the work.
They tell me that I need to keep busy. I need to go to groups. If I
get angry, I need to go to staff and tell them. I must not yell,
threaten, or go after anyone. If I can learn to control my temper
and go to staff when I am angry, then I will get better. If I can
control my temper, I will have a chance to move back to the City.
I WANT to control my temper. I know it will be hard but I will trust
the staff and let them help me. If I get angry, I will go to the
staff for help. I will not yell, threaten, or go after anyone.”
RESULT
BT has been utilizing a therapeutic narrative for only several
weeks. He remains on one to one assistance but the team has begun to
wean this. He has begun to establish a daily routine and looks
forward to his twice-daily reviews with staff.
Fear of punishment was a dominant theme prior to the use of the
therapeutic narrative. It was also difficult to re-establish rapport
with him from day to day, especially after a weekend. The treatment
team attributes improvements in these areas to the use of the
therapeutic narrative. BT's paranoid or fearful verbalizations are
rare or noted only briefly at the beginning of an interaction.
Rapport is established easily and his disorganized thought process
and speaking resolves quickly upon making contact with him. He is
clearly recalling elements of the social story and will recite parts
of it appropriately when particular issues are raised during
therapeutic contacts. The admission diagnosis of schizophrenia is
being re-evaluated.
#3. BJ
BJ is a 33-year-old male admitted to Northeast Center for
Special Care on 1-11-01 with Traumatic Brain Injury secondary to a
Motor Vehicle Accident in 1998, poor impulse control, seizure
disorder, depression, mood disorder, intermittent explosive
disorder, and Insulin Dependent Diabetes Mellitus IDDM.
BJ is fully ambulatory and had no significant physical disability.
His issues were severe cognitive and behavioral disability.
At best BJ's cognitive processing is slow and concrete. Significant
effort is needed to facilitate comprehension and he requires many,
many repetitions in order to learn new information.
BJ's poor judgment and lack of understanding of his medical
condition made it impossible for him to comply with a diabetic diet.
Whenever his blood sugar levels were sub-optimal, his ability to
process information became profoundly impaired and his irritability
extreme. Until he could be stabilized medically, there was no hope
of educating him regarding the importance of diet, regarding the
relationship of diet to behavior, and in turn to his long term goal
of being re-united with his daughters.
There was a direct correlation between verbal and physical
aggression and his blood sugar levels. While staff made every
attempt to try to get BJ to accept healthy alternatives, BJ is a
large, powerful man who became menacing whenever anyone suggested a
different choice of food or drink, no matter how deftly. Finally,
instances of physical aggression qualified him for placement on a
secure unit.
Placement on the secure unit provided our first real opportunity to
make significant gains with BJ. It made it more difficult (although
not impossible) for BJ to obtain food from peers. He could still
order out but he no longer had free access to the facility’s
public cafe. Consequently, his blood sugar levels were more stable.
With diabetic teaching he began to understand the need to limit his
ordering out and blood sugar levels further stabilized.
The following current therapeutic narrative succeeded several
earlier versions. It has continued to evolve BJ’s understanding
progressed by the speech-language pathologist, in consultation with
the dietician. It is reinforced regularly as part of the formal
program of diabetic teaching.
"About Me. My name is (Name). I was born in (Town) on May 23,
1971. I have 3 sisters and 2 brothers. My family owned a grocery and
Laundromat. I was the clerk, cashier, and did cleanup.
I have two daughters, (Name) and (Name). I like to spend time with
my daughters and the most important thing in my life is to become
part of their life again.
My Accident. In 1998 I got in a car accident while I was in Alabama.
I flew out of the sunroof of a truck. I was in critical condition,
blood rushed out of my head. I got a head injury and was in bad
shape. My family came down from (Town) to Montgomery to pray for me.
I was in the hospital for a while.
Rehabilitation. I came to the Northeast Center for Special Care in
2001. My brain affects me sometimes. I didn’t have control of my
anger before but I think it is getting better. I also have to
control my sugar by watching my diet. Sometimes I get angry and call
staff names and swear at them when they suggest that I eat smaller
amounts of food, or different foods. I think its because I forget
that it is important for my health. I want to be a good role model
for my daughters and I want to be around to watch them grow up.
My Goals. I want to get a job. I want to live on my own in (Home
Town).
I want to help raise my daughters.
My Plan. When I get angry I count to 15 and things get better for
me. This way I don’t yell at people or get into fights.
I am working on my memory by using my memory book. I need to
write down what I do each day so that I remember. It is important
for me to spend more time out of my room.
I need help with my diet. I need reminders to help me choose the
right foods, because sometimes I don’t understand it. I am working
on eating what is on my tray and choosing good foods like fruits,
vegetables, and diet drinks and snacks. Instead of trying to order 3
sandwiches at a time I am working on ordering 1.
I know that I can do all of this, so that I can go back to (Home
Town) and be near my family."
RESULT
While on the secure neurobehavioral unit BJ became able to
recite the relationship between diet, behavior, and personal goals
without prompting. He worked intensively with his speech-language
pathologist to fully internalize this information until he was able
to make a formal presentation to the treatment team as a
demonstration of his gains. As a result of his work his behavior
fully stabilized and he was transferred off the secure unit to an
open neurobehavioral unit.
With the exception of a brief period of de-stabilization after he
was transferred off of the secure unit, BJ has maintained his
diabetic stability and has remained behaviorally stable as well.
BJ is much more aware of the importance of diet for his long term
goals. While he frequently begins by asking for something off of his
diet, he now accepts suggestions and recommendations more readily
and sometimes explains without being asked why it is so important to
make healthy choices. On occasions where he remains resistive, he is
asked to review his therapeutic narrative first and then asked to
reconsider. This typically works to change his mind toward a healthy
food choice.
BJ's goal of community reentry has begun to motivate his everyday
actions rather than being a vague wish unrelated to his daily
behavior. He is currently under active consideration for community
placement by the New York State Department of Health Home and
Community Based Services Medicaid Waiver Program for Individuals
with Traumatic Brain Injury and we are hopeful that he will be
accepted and placed before long.
#4. BW
BW is a 58 year old man admitted to the Northeast Center in 2005
with problems including Traumatic Brain Injury secondary to fall in
August of 2004, an old Left Cerebrovascular Accident CVA with Right
Hemiparesis, s/p rib fractures, life long seizure disorder, ataxia
with unsteady gait, long and short term memory problems, severely
reduced initiative and mood, hip fracture, s/p vagal stimulator
implant, dementia, and hypertension.
He presented as disoriented, adynamic, and with depression upon
admission. He frequently refused his therapies (all three services
had been ordered). In fact, he denied needing any help at all,
tended to self isolate, spoke little, but rarely mentioned discharge
or initiated on any topic. A therapeutic narrative intervention was
initiated virtually upon admission.
BW's narrative is reviewed with him daily in therapy. He requires
assistance to read it due to aphasia and visual impairment. It is
read with him for approximately 30 minutes each day.
"My name is (Name). I was born on (Date). I am the oldest of 7
kids. I have 3 brothers and 3 sisters. I was married to my wife
(Name) for 25 years before she died. We have 1 son, Christopher. I
have done all types of labor work. I worked in a paper mill factory
years ago. I have had a seizure disorder my whole life, since I was
3 years old. I am always hoping to find a doctor who can cure me. I
was living alone in (Town) last August 2004 when I had a seizure and
a fall, which caused a head injury. Now I am having trouble with
walking, using my right hand, and my memory.
I went to (Name) Rehabilitation Hospital in (City) to begin
rehabilitation. Now I am at the Northeast Center for Special Care in
Lake Katrine, NY to continue my rehabilitation.
My goals are to get myself better, and live on my own.
I go to Occupational Therapy, Physical Therapy, and Speech therapy
on a regular basis. In Occupational Therapy, I am working on getting
dressed, cleaned up, and getting in and out of my wheelchair safely.
In Physical Therapy, I am working on walking. In speech, I am
working on my word finding and my memory. I sometimes need reminders
about where I am and what I am doing here at Northeast Center. I
live on (Name) unit."
RESULT
Overall improvement was noted after approximately 3-4 weeks. He
has shown remarkable gains in recall of orientation information. He
is now able to name the place, town, and reason for his stay with no
more than an initial sound cue and without referring to the script.
He is aware of having memory difficulties and he demonstrates
awareness of facts concerning familiar people, everyday therapies,
and his goals.
Perhaps most importantly, he no longer resists rehabilitation and
therapy.
The narrative approach is being extended to the issue of wheelchair
safety although the changes made recently are not reflected above.
Occupational Therapy is already reporting significant improvement
with wheelchair safety, e.g., using the brakes.
Brain Injury
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