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Japanese Journal of Comprehensive Rehabilitation Science (2019)

Original Article

The long-term process of recovering self-leadership in patientswith disability due to acquired brain injury: II. Interactions withsurrounding people that promote recovery of self-leadership
Shinichi Wada, MD, MPH, PhD,1 Miki Hasegawa, MD2,3Moriyama Rehabilitation Clinic, Shinagawa-ku, Tokyo, Japan
Sangenjaya Rehabilitation Clinic, Setagaya-ku, Tokyo, Japan
3
The Japan Society of a Caring Community for People with Brain Injury, Setagaya-ku, Tokyo, Japan1
2

ABSTRACT
Wada S, Hasegawa M. The long-term process ofrecovering self-leadership in patients with disability
due to acquired brain injury: II. Interactions withsurrounding people that promote recovery of selfleadership. Jpn J Compr Rehabil Sci 2019; 10: 50-59.
Objective: To create a model of interactions withsurrounding people that promote recovery of selfleadership leading to long-term improvements inpatients with disability due to acquired brain injury.
Methods: We held the 18th Self-Leadership (Shutaisei)
Research Conference comprising about 20 members,
including patients, formal caregivers, medical personnel,
and researchers. The results of semi-structured interviews
with members related to “long-term recovery of daily
activity at home” and “self-leadership” in patients withdisability due to acquired brain injury were qualitatively
analyzed using the Modified Grounded Theory Approach.
Results: The model was created from 16 concepts
related to caregiver interactions generated from ananalysis worksheet. “Gaining the patient’s trust” wasthe starting point of this model. It was found thatpatients seem to progress more smoothly when thepeople surrounding them “suggest tasks and roles set
at the appropriate level,” then “provide support to gain
successful experiences,” and then close the cycle by“creating opportunities to reflect on each experience.”
Conclusion: The model illustrates the flow of interactions
that effectively promote recovery of self-leadership andhas the potential to be developed into a standardized
Correspondence: Shinichi Wada, MD, MPH, PhD
Moriyama Rehabilitation Clinic, 1-11-17 Nishi-Nakanobu,
Shinagawa-ku, Tokyo 142-0052, Japan.
E-mail: wada@aoi-med.org
Accepted: May 6, 2019.
The authors have no conflicts of interest directly relevant tothe content of this article. This work was supported by the
Yuumi Memorial Foundation for Home Health Care and
JSPS KAKENHI Grant Number 17K01582.
©Kaifukuki Rehabilitation Ward Association 2019
doi.org/10.11336/jjcrs.10.50

rehabilitation method for patients with disability due toacquired brain injury.
Key words: stroke, acquired brain injury, life-stage
rehabilitation, in-home rehabilitation, self-leadership
Introduction
The importance of self-leadership is frequently
emphasized in the areas of healthcare, long-term care,and welfare for helping with long-term improvements
when patients with acquired disabilities due to cerebral
stroke and other brain injuries have residual impairments
and activity limitations [1-7]. However, self-leadership
cannot be measured, and outcomes related to therecovery of self-leadership have not been identified.
Existing knowledge is insufficient for elucidating thelong-term process of recovery of self-leadership in
people with acquired disabilities, and requires aqualitative exploration of new aspects of the conditions
and new theories.
This study aims to elucidate the process of recoveryof self-leadership for long-term improvements inpeople with disabilities due to acquired brain injury,
and to develop a model that effectively represents theinteractions with surrounding people that promote
recovery in this population.
Earlier parts of this qualitative study series focusedon the concept of self-leadership that promotes
recovery in people with disabilities [8], and the processof long-term recovery of self-leadership for people
with disabilities due to acquired brain injury (Figure 1)[9]. This study documents and categorizes the elements
of interactions with surrounding people that promote
the recovery of self-leadership.
Methods
1. Study design
Three research questions were raised: 1) How dopeople with disabilities recover (regain) their self-Wada S et al.: Interactions that promote recovery of self-leadership in patients with acquired brain injury51

Figure 1. Model of recovery of self-leadership for people with disabilities [9].

Figure 2. Model of interactions with surrounding people.
leadership? 2) What improvements are seen when selfleadership is recovered? 3) What interactions withsurrounding people help the person recover selfleadership? These questions seek to elaborate theexperiences that change over time, along with theirstages and phases. Data was initially collected throughquestionnaires, and the Modified Grounded Theory
Approach (M-GTA) was used for qualitative analysis[10, 11].
This study was approved by the Ethics Committeeof the Aoi Medical Corporation.
2. Research participantsStarting in February 2015, a Self-Leadership(Shutaisei) Research Conference was held once amonth for approximately two hours per session to
discuss the topic of long-term recovery of abilities
essential for living for patients with disability due toacquired brain injury. Participants with experience andknowledge were represented among multidisciplinary
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Wada S et al.: Interactions that promote recovery of self-leadership in patients with acquired brain injury

medical personnel from multiple institutions (physicians,
nurses, physical therapists, occupational therapists, and aspeech-language-hearing therapist), formal caregivers(welfare and long-term care), researchers (sociology,
psychology, education, and philosophy), and patientswith disabilities. Each conference session was heldwith around 20 participants, including several guest
participants and 18 regular members representing 10
institutions. The members who participated in multiple
conferences had a mean of 20.2±10.7 years (median:
19 years) of experience. On the other hand, some guest
participants had no experience or knowledge ofpatients with disabilities who had made a long-term
recovery.
3. Data collection
During the period from February to June 2015,
members of the Self-Leadership Research Conferencecompleted anonymous, semi-structured interviews about
witnessing, hearing about, or personally experiencing“recovery of life at home that took more than half a year”
and “self-leadership” of people with acquired disabilities
due to cerebral injury. We gathered five to nine responses
for each of the 10 questions, such as “We ask that you
relate anecdotes of ‘Episodes related to shutaisei (selfleadership)’ as specifically as possible. There is no set
format; please give them to us as they come to mind.”
Seven cases were presented by members, and other cases
were also shared during conference discussions. The
questions have been included in the previous articles [9].
4. Analysis
Focus was placed on the recovery (reacquisition) ofself-leadership, which is thought to be associated withthe long-term rebuilding of life. The Delphi technique
was used during the first six months of the conferences:i.e., collective feedback was given to the members bysummarizing answers to the questions, thus allowing
experts to revise their opinions for the next conference.
The Modified Grounded Theory Approach (M-GTA)[10, 11] was adopted for the following analyticaltheme: “Elucidating the process of the recovery ofself-leadership associated with people with acquired
disabilities due to cerebral stroke or other brain
injuries, and interactions with surrounding people.”
Subjects were “Patients who were able to achieve
recovery in life over the long term despite disabilities
caused by nonprogressive acquired brain injury.” Theanalytically focused person was “People such as
medical staff, specialists, and family who interact withthe person with the acquired brain injury.” The focus
was “The patient’s progress” and “Interactions withsurrounding people.” Conditions of stability of acute
symptoms and somewhat stabilized financial andsocial conditions were assumed as premises of theanalysis.
Data was collected from the written answers to thequestionnaires and from the recorded minutes of the
Jpn J Compr Rehabil Sci Vol 10, 2019conferences. Cases that exemplified the process of therecovery of self-leadership in people with acquired
disabilities were collected on the analysis worksheet
and the concepts were defined and named. Concepts
generated in this way were organized in chronologicalorder and categorized by similarities, and therelationships between categories were structuralized.
To perform member checking, discussions were heldwith various participants during the conferences on
the following: whether the analysis was coherent withthe data or interpretation; whether there were any
major inconsistencies; to which contexts the findings
applied; and to what extent they contributed to insightor understanding by the people surrounding the personwith the brain injury to develop the model. For peer
debriefing, discussions were also held with guest
participants, and the workers engaged in caring forpeople with disabilities were also updated on thesefindings to debate the strengths and problems of thisstudy from multiple perspectives of other experts toensure the accuracy and validity of interpretations.
The first author handled “collecting cases for the
analysis worksheet, naming and defining concepts,
categorizing concepts, structuralizing relationships
between categories, and drafting the model” to propose
an agenda for the conferences. Revisions and questions
were discussed in the conferences and revisions weremade as they were discussed. The first author prepared
the draft revisions through consultations withqualitative researchers and persons engaged in caring
for people with disabilities before the following
conference, at which they were discussed again. These
cycles were repeated until there were no morequestions or points for revision.
Results
A total of 18 conferences were held between
February 2015 and September 2016. Analysis
worksheet and model preparation was initiated in
March 2015. Conferences were held as described in
Methods. Concepts were defined, named andcategorized, relationships between categories werestructuralized, and the model was drafted and revised
multiple times per conference to prepare an agenda for
the following conference. When there were objections
and counterarguments, all participants ultimately
agreed by summarizing the opinions and making surethat they did not diverge from the analytical theme andwere easily understood as pertinent to “the process of
the recovery of self-leadership associated with the
improvement of disability due to acquired brain injury
and interactions with surrounding people” and theanalytically focused person, “People such as medical
staff, specialists and family who interact with theperson with the acquired brain injury.” Revisions weremade at least 30 times.
Details of the results on the “Concept of self-

Details

Stages 0‒3
Avoid trying to convince thepatient; instead, wait for a
spontaneous change in his/her
attitude.
Keep in mind that it takes a longtime for the patient to digest his/her physical state and otherchanges and listen patiently. Try
to observe small changes in thedaily interactions.
Remind the patient that changes
will eventually occur.
Do not become preoccupied
with big goals and hopes that
may take a very long time toachieve.
Working with the patient, shift
the focus onto shorter-term goals
that he/she may be able toaccomplish more easily.

Stages 0‒3
Introduce
situations
andopportunities
forgaining
successful experiences, suchas situations where the patient
feels listened to, that his value
as a person is acknowledged,
and he is given permission to
try things out. The supporter’s
attitude is one of thinking
collaboratively with the patient
to figure out how things can bedone.
Activities in groups and places
and opportunities provided withsupport to enable things may
make it possible for the patient toaccomplish things that he/she
may feel anxious or insecure
about or incapable of doingalone. This may also make him/
her realize that there are ways toperform the tasks, as well as allow
him/her to share the fulfilment ofaccomplishing the task together.

Stages 0‒2
Tell the patient that there ispossibility of further change andexplain the predicted prognosis.
It is possible to change positively
despite the disability as long as
life in its entirety is well plannedout.
People with disabilities havedifficulty making independent
decisions without understanding
the current situation or knowing
what may happen, and they feel
confused about the future.
The patient is not aware of his
own state of confusion in Stage0, but becomes aware of it inStage 1.

Stages 0‒1

Take time so that the patient ison the same page as you, andwork together on the challenges
with a long-term approach. Do
not rush to arrive at a conclusion.

Listen without approval or denialwith receptiveness to both thepositive and negative aspects. At
this point, accept all input about
the patient’s emotions or how he/she perceives the disability.
Record the details as told.
Do not give criticism or advice
before building a relationship oftrust.
Acknowledge the patient’s
efforts thus far.

Availability of places andopportunities that allow trial anderror of individual challenges insafetyStages 0‒3

Explain about using the rolemodel so the patient can have an
idea of his/her current andprospective condition(Storytelling)

Check factors that may affect the
future life of the patient, such as
physical function, mental state,high mental function, ADL,
IADL, living environment, andsocial environment from various
perspectives with the help ofprofessionals and family.
Record the patient’s comments
related to how he/she perceives
the disability and the patient’s
notable demeanor in settings
where he/she was observed.
Check for differences between
the patient and his/her supporters’
perceptions of the patient’s
disease and state of disability.
Determine the patient’s degreeof acceptance by observing his/her reactions and body language,
such as nodding. Speak slowly
with the patient so that you can
notice his/her true feelings
through facial expressions andstop talking.

Attitude that accepts the patientas he/she is, including emotions,
how he/she perceives thedisability, etc. Avoid denying,ordering or judging.

Stages 0‒1

Understand (recognize) thepatient’s
current
disease,disability, psychological state,
and environment and examine
his/her strengths and weaknesses
in detail. Limited in terms of timeand space (Present)

Explore what the patient likes
through everyday conversation
or interactions with him/her.
Ask the patient and his/herfamily and friends about how
he/she was before the stroke andhis/her life history.
When visiting his/her home,
ask the patient about things thatmay provide hints about his/her
personality, such as photographs,
things he/she made in the past,etc.
Use tools such as the Interest
Checklist [22].

Definitions

Most pertinent stages

Gain a detailed understanding of
the patient’s personality, thethings he/she likes, pre-stroke
environment and the things he/she valued, such as background,past, and things that do notchangeConcepts

Mitigate anxiety
Present a role model to explain Create situations in which the Approach with a long-term viewthe disability and outlook
patient can do something by trial without rushing to arrive at aconclusionand error in safety

Gain the patient’s trust
Understand the patient’s status Accept the patient as he/she isquo

Understand the patient

Understand the patient’s
personality

Subcategories

Category

Table 1. Fundamental interactions that promote recovery of independence (Starting point).
Wada S et al.: Interactions that promote recovery of self-leadership in patients with acquired brain injury53

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Jpn J Compr Rehabil Sci Vol 10, 2019

Stage 3

Stage 2

Broaden goals and roles:
include things and places thepatient has never experienced
before.

Same as the above.

Same as the above.
Encourage the patient to actually
go out, and try and experience
things that he/she would never
have imagined possible with his
disabilities.

The supporter should always
encourage the patient to think
about what he/she wants, rather
than give suggestions. Have thepatient express what he/shewants to do.

Interact in ways to graduallybroaden the patient’s perspectives
by supporting what he/she wants
to try doing.
Encourage setting long-termgoals.

Broaden perspectives and lay
down longer-term goals in
gradual steps.

Stage 1Rather than assuming that thepatient is unable to dosomething, think with thepatient about how he/she would
be able to do it. Be consistently
faithful to this stance throughboth words and actions.
Allow the patient to have theexperience of succeeding withjust a little help in accomplishing
things that he/she believed weredifficult to achieve with the newstate.
Have the patient experience
success in small increments:
Start with small parts of tasks
that the patient is confident aboutaccomplishing, and having such
efforts recognized by others.

Guide the patient to making
autonomous decisions, even forthings that may seem trivial. If thepatient seems capable, create asituation where he/she selectsfrom among the options toacclimatize the patient tothinking and making decisions
autonomously. Visualize thethree steps:(1) Ask the patient→(2) Patientchooses from among the given
options→ (3) Patient begins toinitiate own propositions.

Use tools such as the Interest
Checklist [22] to start theconversation. However, it isoften difficult for the patient toverbalize what he/she wants to
do in this stage.
Start by providing information
related to activities that thepatient may be interested for an
impetus. At the beginning, ask
the patient to participate (“Iwant you to try this activity withme.”). Take sufficient time forbroad suggestions.

Avoid unrealistic goals andwishes. Focus on small, realistic
goals and temporarily narrow
down the perspectives.
Suggest achieving small and
immediate goals one by one thatlead to the achievement ofbigger goals.

Stages 1‒3

Interactions by stage
Stage 0Stages 1‒2

Encourage the patient to gain
successful experiences in thenear past, present, and future.
Think together with the patient
about how he/she can accomplish
what he/she wants to, andprovide support.

gain(Encourage the patient to try
things out without assistance toallow him/her to identify
difficulties.)

Stages 1‒2

Have the patient make a habit ofindependent decision-making forthings that may seem trivial for
people without disabilities inthis stage where the patient may
have difficulty making decisions
independently.

Provide support tosuccessful experiences

Stages 0‒3

Draw out specific and realistic
wants, needs, and interests thatare achievable and are matchedto the patient’s abilities andsituation. Have the patient shift
from apathy to having an interestin making changes in his/herbehavior.

Suggest tasks and roles that areat slightly higher levels for thepatient and support them.

Introduce opportunities forindependent decision-making

The patient is not aware of or
may be in denial about his newchallenges. Start with difficulties
that he/she already somewhat
acknowledges as a starting point
for the interventions.

Draw out interests, needs, anddesires

Suggest tasks and roles set atappropriate levels

Most pertinent stages

Definitions

Concepts

Table 2. Concepts and interactions by stage that promote recovery of independence.

Same as the above.
Have the patient evaluate himself/
herself in the present incomparison to before the stroke.
Have the patient describe whatdefines him/her.

Same as the above.

Train the patient to have objectivity
in perception. Encourage him/her
to compare the current self not tohimself/herself before the stroke,
but several months earlier, if notjust after the stroke.
Allow the patient to reflect andrecognize that he/she wassurprisingly capable of doing
something he/she believed was
impossible. Recognize thedisparity between the goal andstatus quo and arrive at common
grounds on how much thepatient has accomplished.
Reflecting on something that was“fun” or accomplished allows thepatient to enjoy things.

Check the patient’s degree ofawareness about his/her difficulties
or disabilities, and perceptions
afterwards.

Same as the above.

Patients in Stage 2 and later begin
to feel that they want to try things
because they realize that things
are in an individual’s control.
Exchanges and interactions withpeople who have longer
experience in their post-stroke
lives (peer support, etc.) allows
them to move forward.

(A patient in Stage 1 who sees
somebody else who is active
and vigorous tends to reject it(“That person is a special case,so it means nothing to me.”) At
this stage, limit references to theintroduction of past cases orlifestyles of other patients who
had developed a similar
disability earlier.)

Stages 2‒3

Create opportunities for interactions
with others in similar situations sothat the patient can see others
accomplishing things successfully
and feel encouraged that he/she may
be able to do the same thing.

Focus on individual accomplishments
and compare them to the patient’s
immediate post-stroke phase toencourage objectivity in the patient’s
own self-evaluation. Reflect uponsuccessful experiences in the near pastand re-acknowledge them.
Stages 0‒3

Create opportunities to interact
with others in similar situations

Create opportunities to reflecton each experience(Patients in Stage 1 do not haveconfidence that they can meetothers’ expectations or do certain
things to get better. Conveying
to patients the hopes andexpectations of others tends tothem shut others out moreadamantly.)

Stages 2‒3

Tell the patient that you areinterested and have confidence
in him/her so that he/she isencouraged to act proactively inorder to fulfill the expectations of
the surrounding people.

Convey interest and confidence
in the patient

54
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Wada S et al.: Interactions that promote recovery of self-leadership in patients with acquired brain injury55

leadership” [8] and the “Model of Recovery of SelfLeadership” (Figure 1) [9] are discussed in other partsof the series. This article focuses on the results on“interactions with surrounding people that promote
the recovery of self-leadership.”
1. Concept generation and categories
As mentioned above, analysis worksheet and model
preparation was started in March 2015. Revisions
were made repeatedly in the conferences with theanalytical themes and analytically focused person inmind, and 45 concepts were generated from the
M-GTA analysis worksheet [9].
An example of the concept generation process ispresented below. For instance, the process for
finalizing the concept “Accept the patient as he/she is”
consisted of first extracting 14 specific cases such as“Value the process of working together through things
that the patient cannot do until he/she can either accept
this or do it to his/her satisfaction,” “Accept the patientas an autonomous being; that is, wait for the patient toaccomplish tasks within his/her capacity instead of
doing it for him/her, and respect the person as anequal” from the interview text data, and then debating
the most appropriate definition at the conferences.
This concept was defined as having an “Attitude that
accepts the patient as he/she is, including emotions,
how he/she perceives the disability, etc. Avoid denying,ordering or judging.” The concept was initially named“Acceptance.” However, several participants argued
that the term “acceptance” was potentially misleading
because it has already been used by experts fromvarious other fields who have attached meanings to
the term that are different than those intended here.
Through repeated discussions at the conferences tocome up with a more common expression that is easierto understand, agreement was ultimately reached on“Accept the patient as he/she is.”The concepts generated were categorized by process.
Sixteen concepts were related to “interactions withsurrounding people” (Tables 1, 2) and the model of“interactions with surrounding people that promote
recovery of self-leadership” was investigated based on
them.
2. Model of interactions with surrounding people
Concepts representing the “interactions of surrounding
people that promote the self-leadership of people withacquired disabilities” were organized in chronologicalorder and categorized according to the analyticaltheme, the analytically focused person and the stagesof recovery of the patient. The concepts were integrated
into a model that illustrates suitable interactions
according to each stage of recovery (Figure 2).



2.1 
Interactions with surrounding people that
promote recovery of self-leadership: Foundations(Origin)
The dynamics of the 16 concepts of “interactions ofsurrounding people” to encourage the transition frominertness (Stage 0 and 1) to rebuilding a self-led life
were discussed. The six concepts, two subcategories
and one category presented in Table 1 were consolidated
as being prerequisite and fundamental to the otherconcepts related to “interactions with surrounding
people” through the course of discussion in theconferences.
We observed a spontaneously wide range of degreeof abstraction that the concepts represented; someconcepts were specific while others were comprehensive.
This spread made it easier to draw a comparison
between the concepts. Consequently, two of theconcepts were elevated to subcategories and one to acategory. This process is described below.
There were no objections to the conclusion that
“Understanding the patient” was fundamental to theinteractions at the preliminary stage of promoting
recovery. “Understanding the patient’s personality”
was chosen to summarize the patient’s past and“Understanding the patient’s current status” to describe
the present. These were relatively more specific ideas,
as well as two of the most important requirements forunderstanding a patient, and were therefore merged
under the subcategory “Understanding the patient.”
The importance of “mitigating anxiety” was also
discussed repeatedly as being fundamental for having
people with disabilities accept various approaches.
The four concepts “Accept the patient as he/she is,”“Present a role model to explain the disability andoutlook,” “Create situations in which the patient can dosomething by trial and error in safety” and “Approachwith a long-term view without rushing to arrive at aconclusion” depict relatively specific actions bysurrounding people that would be grouped under the
more abstract subcategory “Mitigate anxiety.”
The category “Gain the patient’s trust” is at thehighest level of abstraction, overarching all the otherconcepts. It is also the fundamental starting point of allinteractions and none of the approaches could be
effective without it. Some of the discussions that led tothis conclusion are excerpted below.
First, participants shared 18 specific examples ofsituations that encouraged a gradual development ofself-leadership; these brought up the concept that was
eventually named “Gain the patient’s trust.” Examples
included “staff members that the patient is friendly
with and speaks to often provided encouragement andworked together with the patient” and “the patient
initially did not have the confidence to leave his/herhome and was nervous about commuting to the center,so the staff started by encouraging communication
with other users to familiarize the patient with thecommunity so that he/she could enjoy and be motivated
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Wada S et al.: Interactions that promote recovery of self-leadership in patients with acquired brain injury

to come to the center.” This would make the analysis
coherent and prevent major inconsistencies, because
the ideas of “Understand the patient” and “Mitigate
anxiety” are implied. These would be applicable in the
preliminary stages of interactions to promote theinitiation of action. Since the other interactions are notpossible without first gaining the patient’s trust, thistype of interaction would be indispensable in Stages 0
and 1. Participants reached an accord at the conferencesthat these results would promote understanding andinsight in the people surrounding patients with a brain
injury.
The definitions and details of the concepts of “Gainthe patient’s trust” are shown in Table 1.
2.2 Flow of interactions with surrounding people
that promote recovery of self-leadership
The remaining seven concepts represented the typesof interactions that promote recovery of self-leadershipafter gaining the patient’s trust. The seven concepts
that were determined to be at equal levels of abstraction
were organized to obtain results, as shown in Figure 2.
The definitions and details of the concepts are shownin Table 2.
A consensus was reached through discussions andrevisions at conferences on the flow of interactions
that are described below. People with disabilities will
be open to listening only when the surrounding peopleinteract with them in ways that “gain the patient’s
trust.” The two concepts “suggest tasks and roles set atthe appropriate level” and “draw out interests, needs,
and desires” are preliminary to initiating actions, andwere believed to represent approaches that incite
action after building a trusting relationship.
Next, two concepts that promote actual behaviors
were developed. “Introduce opportunities for independent
decision-making” was founded on 17 specific examples
from the text data of the interviews, such as “Guide thepatient to make his/her own decisions and judgments,”“Formulate options and create a situation where thepatient makes a selection on his/her own to acclimatize
the patient to thinking and making decisions
autonomously.” Specifically, patients should decidefrom among the available options even for things that
may seem trivial, particularly in Stage 1 when it isespecially difficult for the patient to initiate actions.
“Providing support [for the patient] to gain successful
experiences” offers a chance for the patient toexperience that he/she is capable of doing certain
things. These two concepts were believed to promote
recovery of self-leadership by encouraging the patient
to experience control over his/her own behavior.
Furthermore, “Create opportunities to reflect oneach experience” was believed to be a concept that
follows action. Reaffirming the accomplishment ofsomething that the patient failed at in the recent past
was considered to promote a clearer recognition of theable self. This reflection and confirmation would also
Jpn J Compr Rehabil Sci Vol 10, 2019mean to “understand the patient” at present, which inturn would lead to “mitigating anxiety” and “gaining
the patient’s trust,” to complete the cycle of interactions
that constitute this model.
There are also two concepts that were not includedin this cycle. Both were highly likely to be ineffectivein the inert Stage 1, and would only be effective inStages 2 and onwards. “Create opportunities to interact
with others in similar situations” introduced to aperson in Stage 1 rarely led to self-led actions due torejecting attitudes, such as “It does not apply to me
because I am different from that person.” Thus, it was
believed to only help patients in Stage 2 or later tomove on to the next stage. “Convey interest andconfidence in the patient” also led to the reverse effectin Stage 1 patients, who often shut themselves off
more adamantly, and would only be helpful inprompting patients in Stage 2 or later to progress to thenext stage.
Discussions and revisions were repeated withconsistent focus on the analytical themes, subjects ofanalysis, analytically focused person and focus toachieve results that were approved as pertinent by
those experienced in long-term caring for people withdisabilities.
Discussion
Through the discussions, we hypothesized a flowthat promotes the recovery of self-leadership byunderstanding patients with disabilities, mitigating
their anxiety, and gaining their trust as a precondition
for other interactions initiated by the people surrounding
them. Furthermore, real experiences gained in response
to appropriate suggestions and confirmation by reflection
led again to understanding within the patient, which
completes the cycle that comprises this model.
This model schematizes behavioral changes that
promote self-leadership and allow individuals to act
and live in their own way. The validity of this model isdiscussed in the following section with reference toother established theories that also elucidate behavioral
change.
The finding that “Gaining the patient’s trust” is thefundamental starting point for the interactions parallels
the approach used in coaching [12], specifically thatthe preliminary stage of coaching most requires theformation of a solid rapport/relationship of trust. The
other interactions are not possible without gaining thepatient’s trust; thus, it was considered a required
concept for Stages 0–3. There are also other similarities
between the flow of the present model and thecoaching process. In terms of flow of approach, thismodel forms a cycle that starts by understanding thepatient, making appropriate suggestions to prompt realexperiences, recognizing through reflection, andcoming back to understanding the patient. The coachingprocess has many things in common with the presentWada S et al.: Interactions that promote recovery of self-leadership in patients with acquired brain injury57

model in that it promotes desired behaviors byunderstanding the current status, setting goals, clarifying
the disparity between the current status and envisioned
goal, planning the actions, and following up. However,the present model distinguishes itself from thecoaching process in that it is structured according to
the patient’s stage of recovery of self-leadership(adaptation stage), how “Understanding the patient”
fits under “Gaining the patient’s trust,” and how“Opportunities for independent decision-making” and“Support for successful experiences” are incorporated
into the process rather than being considered a skill.
In that sense, this model is more specialized for therecovery of self-leadership in people with acquired
disabilities.
The interactions promoted in this model are notinstructive, but are supportive in nature and can beconsidered similar to responses in motivational
interviews [13, 14]. Motivational interviewing is amethod of supporting people to make desired changes
in various contexts. The interventions are not intended
to instruct by providing solutions or advice, but are
based on the premise that people can find solutions
only in a safe atmosphere of positive empathy where
they are free to explore their experiences [13, 14].
Empathy draws out the capacity for recovery [15], andexplains the effectiveness of supportive interactions inthis model. “Create situations in which the patient can
do something by trial and error in safety,” “Approachwith a long-term view without rushing to arrive at aconclusion,” “understand the patient’s current status,”“suggest tasks and roles set at the appropriate level,”“provide support to gain successful experiences” and“create opportunities to reflect on each experience”
are not instructions, advice, or proposed solutions, but
are intended to promote safe and supportive settings inwhich the patient is repeatedly exposed to situations inwhich he/she perceives that success is attainable.
Motivational interviewing theorizes that constructive
behavioral changes are fostered in an atmosphere that
promotes acceptance and confidence in which thepatient can explore the disparities between the current
status and personal ideals and values without fear [13,14]. It is believed to promote changes that can foster
self-led actions for patients throughout Stages 0‒3 of
the Model of Recovery of Self-Leadership.
“Provide support to gain successful experiences” isthe only type of interaction mentioned above that is
valid in Stages 1–3. This is because patients in Stage 0
believe that they are capable of doing things that they
are actually not capable of doing. Patients in this stage
first need to become aware of their incapacities before
entering the subsequent stages that boost their selfefficacy by achieving successful experiences. Stage 0
promotes awareness of the divide between the current
status and desired state to lead patients to Stage 1, in
which they begin to gain a “Vague recognition of thedisabled self.” In this period, the patient is very“ambivalent,” the corresponding notion in motivational
interviewing. Ambivalence refers to having conflicting
attitudes of desiring change and defending the current
status [13, 14]. Awareness of the importance of change
is associated with the degree of disparity between the“current status” and “desired future state.” A certain
contradiction is necessary for motivation, and a larger
contradiction would also strengthen the awareness of
the importance of change. Furthermore, ambivalence
will not be present without some disparity between the“current status” and “desired future state.” The firststep to change is to “enter the state of ambivalence.”
Larger disparities intensify the ambivalence, andgreater ambivalence also increases the potential forchange [13, 14]. Interactions in Stage 0 are intended topromote recognition of the difference between thecurrent status and the desired future state by“Presenting a role model to explain the disability andoutlook,” and prompt awareness of the contradiction
by “suggesting tasks and roles set at the appropriate
level” and “creating opportunities to reflect on eachexperience.”
The present model is similar to the “Staging andprocesses of change” model [16, 17] in that it focuses
on staging and approaches in human behavioral
changes. “Present a role model to explain the disability
and outlook” in the present model is effective in Stages
0 and 1 of the Model of Recovery of Self-Leadership[9], which is characterized by resistance to taking
action, but decreases in importance in Stage 2 andlater. Similarly, the Stages of Change model teaches
that education to raise awareness about the benefits ofchanging behavior is important in the transition period
from the Precontemplation to Contemplation stage,
but education does not promote the subsequent stepsof behavioral change [17]. “Presenting a role model toexplain the disability and outlook” in the present
model corresponds to education, and the Stages of
Change model supports its effectiveness up to Stage 1.
The tasks and roles in “suggest tasks and roles set atthe appropriate level” refer to tasks and roles withclearly defined levels of difficulty that are neither too
easy nor too difficult for the patient, and there is somecommonality with the concept of “Skills andChallenges” in the flow theory [18, 19]. Flow is a stateof mind characterized by sustained concentration,
absence of slowness and sense of control under
specific conditions including a clear goal, immediate
feedback and balance between challenge and skills,
filled with excitement and not wanting that state tocome to an end [18-20]. In other words, activity on theverge of the balance between skill and the size of thechallenge is something that can be accomplished withsome effort. Thus, there is believed to be an appropriate
level of difficulty that advances gradually in tasks inStages 0–3 in the Model of Recovery of SelfLeadership. Furthermore, the immediate feedback
produced by “creating opportunities to reflect on each
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Wada S et al.: Interactions that promote recovery of self-leadership in patients with acquired brain injury

experience” in this model promotes flow and links tothe patient’s self-motivated behaviors.
“Introducing opportunities for independent decisionmaking” promotes motivation and self-reliance tofoster self-leadership, thereby promoting intrinsic
motivation [20]. Intrinsic motivation is associatedwith activities that are goals in themselves andpsychological states in which we are completely
engrossed in the activity itself. Even a small
opportunity for choice increases intrinsic motivation,and engages us in the activity with more passion andfun [20]. In terms of behavioral change for the
management of chronic diseases, people experience astronger sense of determination when they are given
two options instead of one [17]. People in Stage 1 orearly in Stage 2 with less motivation of the three elementsof self-leadership have little intrinsic motivation. This
indicates why “Introducing opportunities for independent
decision-making” is most important in these stages.
The relationships between the people withdisabilities and the professionals surrounding them arecompared to the Physician-Patient Relationship model[21] according to the stages of the Model of Recovery
of Self-Leadership. In the early stages of developing
the disability, the relationship is characterized bypaternalism because it is difficult for the patient to act
in self-led ways. Transitioning from Stage 0–1 to laterstages is more likely to follow the interpretive model,
as it requires elucidating the values of the patient,presenting a role model, conversing in non-instructive
ways to assist in decision-making, and communicating
supportively through “reflecting on each experience”
in the successful accomplishment of actions. In Stage
3 and onwards, the medical staff convert to theinformative model, in which their job is to provide
information to the patient and act according to thepatient’s choices.
To summarize, the interactions of surrounding
people that promote self-leadership are reviewed bystage. Stages 0 and 1 start with “support.” In Stage 2,
the preparatory stage to taking action, surrounding
people advance expectations in tandem with thepatients’ capabilities. In Stage 3, in which actions areaccompanied by confidence, surrounding people
engage in standby support in which they provide help
as needed but generally remain as supportive
observers. Finally, people surrounding the patientswith disabilities learn from them in Stage 4, when they
have become capable of living within a new value
system. While the surrounding people “accept patientsas they are” in the initial stages, the patients begin to
accept themselves the way they are as they advancethrough the stages.
As the qualitative stage of the study on selfleadership ends, we plan to develop a self-leadershipstaging assessment scale, integrate specific measures,and initiate a quantitative study derived from thismodel to investigate the effects of “self-leadership” in
Jpn J Compr Rehabil Sci Vol 10, 2019improving daily life for individuals.
Additional noteThis study was based on “The Shutaisei (SelfLeadership) Research Conference”. The members
who participated in the conference significantly are as
follows: Akira Ogawa (Nurse, Tokyo Metropolitan
Rehabilitation Hospital), Setsuko Ogawa (SpeechLanguage-Hearing Therapist, JR Tokyo General
Hospital), Daisuke Kawagoe (Occupational Therapist,
Moriyama Rehabilitation Clinic), Jun Kawanabe(Social Worker, Social Welfare Corporation Setagaya
Volunteer Association Care-Center Flat), Yoshikazu
Goto (Occupational Therapist, Iki-iki Welfare Network
Center), Ryuji Kobayashi (Registered Occupational
Therapist, PhD, Professor, Division of Occupational
Therapy, Faculty of Health Sciences, Tokyo
Metropolitan University), Yukiko Komai (Chief
Director, Iki-iki Welfare Network Center), Masahiro
Sakakibara (CEO, Mono Well-Being Co., Ltd.),
Yumi Tezuka (Representative Director, Kisuikai
Incorporated Association), Sosuke Nagao (RegisteredOccupational Therapist, Long-Term Care Facility,
Kunitachi Aoyagien), Suzumi Nakashima (Physical
Therapist, Sangenjaya Rehabilitation Clinic),
Masahiro Nochi (Professor, Graduate School of
Education, The University of Tokyo), Yoko Nonoyama(Social Worker, Iki-iki Welfare Network Center),
Sachiko Hasegawa (Former Vice Director of Nursing
Service Department, Nippon Medical School
Hospital), Hiroshi Hasegawa (Philosopher), Kayoko
Fujii (Facility Director, Day Service Yumeko),
Maki Fujita (Occupational Therapist, Sangenjaya
Rehabilitation Clinic), Miwako Hosoda (VicePresident, Seisa University), Kanchi Mishima(Standing
Director,
Kisuikai
Incorporated
Association), Takayuki Watabe (Occupational
Therapist, Rehabilitation Center, Showa University
Fujigaoka Rehabilitation Hospital), Toshiko Wada(Social Worker, Social Welfare Corporation Setagaya
Volunteer Association Care-Center Flat).

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