Ide-Okochi et al. BMC Public Health 2013, 13:69
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RESEARCH ARTICLE

Open AccessIllness experience of adults with cervical spinal
cord injury in Japan: a qualitative investigation
Ayako Ide-Okochi1*, Yoshihiko Yamazaki2, Etsuko Tadaka3, Kazumi Fujimura4 and Toshie Kusunaga5

Abstract
Background: There is growing recognition that healthcare policy should be guided by the illness experience froma layperson’s or insider’s perspective. One such area for exploration would include patient-centered research on
traumatic Spinal Cord Injury (SCI), a condition associated with permanent physical disability requiring long-term andoften complex health care. The chronicity of SCI can, in turn, affect individuals’ sense of self. Although previous
research in Western countries suggests that people with SCI find a way to cope with their disability through social
participation and family bonds, the process of adjustment among people with cervical SCI (CSCI) living in Japan
may be different because of the restrained conditions of their social participation and the excessive burden on
family caregivers. The purpose of this study was to examine the impact of injury and the process ofaccommodation in people with CSCI in Japan.
Methods: Semi-structured home interviews were conducted with 29 participants who were recruited from ahome-visit nursing care provider and three self-help groups. Interviews were recorded, transcribed and analyzed
based on the grounded theory approach.
Results: Five core categories emerged from the interview data: being at a loss, discrediting self by self and others,
taking time in performance, restoring competency, and transcending limitations of disability. Overall, the process bywhich participants adjusted to and found positive meaning in their lives involved a continuous search for
comfortable relationships between self, disability and society.
Conclusions: The results of this study suggest that persons with CSCI do not merely have disrupted lives, but findpositive meaning through meaningful interactions. Family members added to the discredit of self by making the
injured person entirely dependent on them. Gaining independence from family members was the key to restoring
competency in people with CSCI. At the same time, social participation was pursued for transcending thelimitations of disability. The results also imply that social issues affect how people interpret their disability. Thesefindings suggest that public health policy makers should recognize the need to enhance independence in people
with disability as well as change the social assumptions about their care.
Keywords: Illness experience, Biographical reinforcement, Loss of self, Social participation, Social relationship,
Spinal cord injury* Correspondence: ayokouchi-tky@umin.ac.jp
1
Department of Nursing, School of Medicine, University of Ehime, Ehime,
Japan
Full list of author information is available at the end of the article© 2013 Ide-Okochi et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of theCreative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use,
distribution, and reproduction in any medium, provided the original work is properly cited.

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Background
In Japan, it is estimated that more than 100,000 persons
suffer from spinal cord injury (SCI), and that 5000 persons
incur a SCI each year [1]. Of these persons, the proportion
with cervical SCI (CSCI) is estimated at about 60% [2].
People with CSCI experience a variety of difficulties resulting from a sudden onset of disability. These difficulties,
which include motor deficits, sensory deficits, and bowel
and bladder dysfunction, require ongoing medical management. Therefore it is crucial that healthcare professionals understand and take heed of the layperson’s illness
narratives to deliver patient-centered health care [3].
A number of authors have attempted to illustrate not
only the impact of chronic illness on the lives of thoseexperiencing it, but also how they try to make sense of
their illness. Bury [4] regarded chronic illness as constituting a major disruptive experience in the past, present,
and future — what he termed a ‘biographical disruption.’
Charmaz [5] developed the idea of ‘loss of self’ [5], inwhich people with physical disabilities experience theinteraction between self and significant others as having
a negative impact on their social life and self-image.
In contrast to these studies, which presented the negative impact of chronic illness on personal relationships
and esteem [4,5], some studies found that the illness experience can also have positive consequences. For example, in one study, people suffering from arthritis tried
to interpret the cause of illness in relation to their biography, and employed strategies to create a sense of coherence — a process Williams [6] termed ‘narrative
reconstruction.’ Similarly, in a study of HIV-positivemen, illness onset was associated with positive consequences which the researchers termed ‘biographicalreinforcement’ [7]. Specifically, men who had lived withhemophilia and were infected with HIV through bloodtransfusion did not experience HIV as biographicallydisruptive. This was in comparison to men who were
infected after practicing unprotected sex with a homosexual partner. The authors explain that the formergroup experienced ‘biographical reinforcement’ as they
only had to modify their already adjusted life andbiography as a result of their chronic condition.
A few studies have explored the positive experience ofliving with SCI. Based on Charmaz’s ‘loss of self ’ concept[5], Yoshida [8] argued that persons with traumatic SCI
experience a pendular process between the nondisabled
and disabled self. Furthermore, Yoshida [8] argued thatthe outcomes of identity reconstruction were ‘loss,’ ‘sustainment,’ ‘integration,’ ‘continuity’ and ‘development of
the self.’ Based on a phenomenological study, DeSantoMadeya also suggested that persons with SCI and theirfamily members positively interpreted their life with disability as a continuous process of learning which mightprovide a family bond and a new social goal [9].

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Based on these studies, the factors that may be relevantto the achievement of successful emotional adjustment
post-SCI are presented. First, it is considered that social
participation is essential for the achievement of successful
accommodation [8,10,11]. In particular, some authors[8,10-12] have focused on social participation throughlabor, because working provides opportunities not only toobtain financial security, but also to enhance self-worth
through meaningful interactions in the workplace [12].
Second, it is considered that having a strong family bondhelps people with SCI heal their anxiety, get to know the
injury, and reconstruct their life after injury [9,12].
However, these findings may not be applicable to persons with CSCI in Japan. In terms of social participation,it has been estimated that people with a disability occupy only 1.65% of the current Japanese labor force inprivate companies [13]. Social participation and evenjust leaving the house were identified as difficult forventilator-dependent persons with CSCI because of alack of aides other than family caregivers [14]. With respect to the strong family bond [9], relying on caregivers
for self-care may negatively influence the psychologicaloutcomes of persons with SCI in Japan. Specifically, about
75% of family caregivers in Japan, most of whom are theparent or spouse [15], provide care for more than 19 hours
per day for care recipients with SCI [14]. This is in comparison to Western studies which have reported family
caregivers as providing less than 10 hours of care per day[14]. Consequently, the care burden for Japanese families
is significantly higher and likely to produce restrictive consequences in the lives of people with CSCI, including lessindependence in decision making [16].
The goal of this study was to characterize how persons with CSCI living in Japan manage their illness,achieve a sense of control over their life, and findpositive meaning and continuity from their former life
despite their injury — what some authors have termed‘accommodation’ [10,11,17]. Understanding how they havesuccessfully adjusted to their lives and found positive
consequences may hold important lessons about healthcare policies that could support people with SCI not only
to survive, but also to find positive meaning in their life.

Methods
Grounded theory

Data were collected and analyzed based on the groundedtheory approach [18]. Grounded theory involves the application of empirical methodology to the analysis of the data,and it is used for the purpose of building theory from thedata. According to the grounded theory approach, theory
is not developed merely on description, but also by an arrangement of categories (concepts) that are systematicallyinterrelated to present an explanation of the phenomenon[18]. This methodology was used because this study aimed

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not only to describe the process of adjustment, but also todelineate the relationships between concepts found in theprocess of adjustment. In this study, ‘process’ refers to activities, interactions, and emotional responses related tothe injury.

Study sample and sampling strategy

The study sample was obtained through professional
and personal contacts. Following written approval of the
University of Tokyo’s Research and Ethics Committee, aquery letter was sent to 31 eligible participants with
CSCI who were interested in being interviewed. Theirnames and addresses were given with consent by representatives of one home-visit service provider and three
self-help groups. The home-visit service provider was
located in Ehime Prefecture. The three self-help groups
were located in Ehime Prefecture, Hyogo Prefecture andOsaka Prefecture. Ehime Prefecture is primarily rural,
Osaka Prefecture is urban and Hyogo Prefecture has elements of both. These self-help groups developed under
the influence of the independent living movement thatoriginated and developed in the US [19]. Japanese people
with disability who practice independent living usually establish a Center for Independent Living, which enables
them to secure the availability of personal assistants [20].
The query letter included a brief description of thestudy and asked for participation. In addition, the principal investigator telephoned all potential participants to
explain the study purpose and schedule a mutually convenient date and time to meet. Although the process ofsampling was not theoretically ideal, this study’s systematic data collection process was considered acceptable,
because constant comparisons between concepts werestill being made during analysis [18].
Patient demographic data are presented in Table 1. The
final sample consisted of 27 men and two women who sustained a traumatic CSCI. The participants recruited fromthe home-visit service provider included elderly persons
who incurred their injury at age 40 or older. Conversely,
participants recruited from the self-help groups tended tohave incurred the injury in their teens or 20s. Comparedwith the ratio of student participants returning to the sameschool (N = 7, 53.8%), it was difficult for the adult participants who were employed at the time of onset to return tothe same job (N = 0).
Seven out of 29 participants had their accidents atwork and qualified for compensation. Three participants
were dependent on a ventilator 24 hours a day. Seven
participants could hold their torsos without a thoracic
belt and five could walk with a stick or by holding ahandrail. The other 22 participants could not hold their
torsos. Thirteen participants could propel their wheelchair and two could drive a modified car.

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Interview

Interviews were conducted over a 5-month period (April
to August 2009). The interview guide was developedaround two research topics: 1) the impact of injury on participants’ lives; and 2) how participants achieved a sense ofcontrol over their life and found positive meaning and continuity from their former life despite their injury. For thispurpose, the study focused on: 1) perceptions of self with
CSCI; 2) performance of self-care and self-management ofsymptoms; and 3) conditions of social participation and social relationships.
Although the self is constructed separately through social relations, at the same time there is a whole self or
identity that is an integration of various aspects of self
and is consistent throughout the life cycle [8,17]. The‘self’ concept is used in this study as an organization ofvarious aspects of self that have reshaped after the injury
and constitute identity.
All interviews, with one exception, were conducted in
the participant’s home. This was an ideal location because
it enabled the provision of a comfortable atmosphere andallowed the researcher to obtain data through observation[9]. Data were collected by the principal researcher inaudiotaped and transcribed individual interviews. The
principal researcher observed the participants’ interactions
with caregivers and this data provided clues for interpreting the relationships between concepts.
Analysis

In the grounded theory approach, analysis involves open
coding, axial coding and selective coding to develop analytic categories [18]. Coding means ‘deriving and developing concepts from data’ [18] through constantly goingfrom data to concepts.
Open coding begins with reading the transcripts several
times then dividing the transcripts into codes/concepts,
which are later compared with other codes/concepts derived
from other participants’ transcripts in terms of characteristics
and modes. Axial coding is used to interrelate codes/concepts for the purpose of making a more abstract hypothesis,
which is derived from constant comparison between categories/themes. Selective coding is used to develop core variables
that integrate categories into a theoretical construction.
Data were considered saturated when no further codes
could be identified, the existing categories were coherent, and there were enough variations explaining the categories. Although data saturation had been achieved
after the completion of 28 interviews, interviews continued until the researcher finished interviewing all of those
who had already volunteered to participate in the study.
Methodological rigor

Credibility, transferability, dependability, and confirmability are the criteria used to support the rigor of qualitativeIde-Okochi et al. BMC Public Health 2013, 13:69
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Table 1 Demographic profile of the participants (N = 29)
Characteristics
GenderNumber

Percent

Male

27

93.1
6.9

Female2

AgeMean ± SD (range)

48.1 ± 12.4 (26–77)

Age at injury

Mean ± SD (range)

30.7 ± 16.3 (14–69)

Duration of disability

Mean ± SD (range)

16.9 ± 9.9 (4–36)

Level of injury

Type of injury

Cause of injury

Employment at the time of onset

C1

2

6.9

C3

6

20.7

C4

10

34.5

C5

6

20.7

C6

3

10.3

Unknown2

6.9

Complete

17

58.6

Incomplete

12

41.4

Road traffic accident

15

51.7

Sporting accident

9

31.0

Fall

3

10.3

Other accident

2

6.9

14

48.3

Employed
Returned to the same job
Student

13

Returned to the same school

Employment at the time of interview

Marital status

Household composition

Main caregiver

Receiving any kind of pension

0
44.8

7

Retired2

6.9

Employed

10

34.5

Unemployed

19

65.5

Married1034.5

Single (never married)

17

58.6

Divorced

2

6.9

With any family members

22

75.9

Lives alone

7

24.1

18

62.1

Family members
Spouse9Mother6

Father2

Siblings

1

Paid caregivers

11

37.9

Yes

26

89.7

No

3

10.3

research [21]. Credibility was demonstrated through a)member checking; b) peer debriefing; c) prolonged involvement; d) persistent observation; and e) triangulation [21].
With respect to a) member checking, five participants were
contacted by e-mail and were given a summary of theirtranscripts and of the emergent themes developed fromthe data of all participants, to ensure that the interpretation

was truly reflective of their experience. All five participants
recognized the themes as true reflections of their experience of living with CSCI. With respect to b) peer debriefing, a qualitative research expert checked that the data andinterpretation were coherent and audited the study
process. As for c) prolonged involvement, and d) persistentobservation, the principal author became acquainted with

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18 participants prior to the individual interviews and had
opportunities for observational study over the 5 month
duration of the study. Moreover, triangulation was ensured
because data were collected through both interviews andobservation. Differences in the characteristics of participantgroups (recruited through home-visit service vs. throughself-help groups) also demonstrated variations that contributed to the construction of an abstract explanatory frame.
Transferability was accomplished by providing a thorough,dependable decision trail to demonstrate that the researchfindings have meaning to people in similar conditions. Dependability was ensured by providing a written decision
trail of how the researcher made categories from raw data.
Confirmability was accomplished by providing a thoroughdescription of how data were collected.
Ethical considerations

The study was conducted after approval was obtained fromthe Research Ethics Committee of The University of Tokyo.
All participants were informed of the study objectives anddesign and gave their written consent for the interviews.
They were free to terminate the interview if they wished.

Results
Five main themes emerged from the data. These themes
revealed the impact of CSCI on people’s lives and how theyreconstruct their life after the onset of disability. The fivethemes were: a) being at a loss; b) discrediting self by self
and others; c) taking time in performance; d) restoring competency; and e) transcending limitations of disability. These
themes and their subcategories are presented in Table 2.
Theme 1: Being at a loss
Unknown body

Participants constantly experienced physical disordersthat were unknown before the injury. Immediately after
the injury, participants perceived that their “legs did notmove” and/or that they “could not breathe.” Participants

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demonstrated that they could not understand how they
had an “illness” that could not be cured. A participant
stated, “I did not have any idea what would happen if avertebrate animal had damage to their spinal cord.” Thisparticipant spoke of his disappointment when he could
not find even a small improvement after surgery performed by physicians a year after the onset of disability.
Disorders in physiological function and mobility werementioned as current sources of disruption. A participant
spoke of his cynical perception of the body that did notobey his will. Bowel disorders bothered him even when hehad become competent in managing bowel symptoms
after a decade of struggle.
“I had managed my evacuation. However, in short, I
came to have more bowel incontinence. On the way,things have changed dramatically and I lost control on
the way.”

Unknown lives

Participants also spoke of their struggle in dealing withthe uncertainty brought by the injury into their lives. At
the time of discharge, participants and their family
members who did not own a house struggled with finding an apartment. Participants and their family members
were also anxious about living at home with a small
number of family members taking responsibility for care.
“I am from A (prefecture). I couldn’t live even if I
returned to A. That’s why I have lived in a hospital all
the time.”
Participants also spoke of their uncertainty in finding a
way to make a living. Unknown future financial status
was stressed by participants who were not eligible fordisability pensions. They were afraid of living under social security. Uncertainty about the future after their

Table 2 Themes and subcategories
Theme

Subcategories

Being at a loss

Unknown body
Unknown lives

Discrediting self by self and others

Discrediting self in physical ability and appearance
Discrediting self in dependence
Being perceived as incompetent by others

Taking time in performance

Taking time in accomplishment
Taking time in reaching normalcy

Restoring competency

Finding retained abilities
Developing independence

Transcending limitations of disability

Seeing self from a new perspective
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parents were deceased was also expressed by participants who were cared for by their parents.
Theme 2: Discrediting self by self and others
Discrediting self in physical ability and appearance

Participants stressed their perception of incompetence when
they compared themselves with their former self as an ablebodied person. Participants stated that prior to the injury,
they were responsible for managing their life. However, because of the injury, participants stated they became a person
who could not do anything without the aid of someone else.
Participants scornfully described their body with CSCIin terms such as ‘a disabled body on a wheelchair.’ As an
example of self-discrediting, one participant who anticipated being stigmatized tried not to take part in a funeral, even though it is a social obligation for the only son
to be a leader of the ceremony.
“To be honest, with this disabled body, I did not wantto conduct my father’s funeral. Because my body is
disabled, I hated to attend his funeral.”Page 6 of 10

family as strange and conflicting because they weretaken care of by their aged and ailing mothers, while it
was social obligation for a son or daughter to take careof their aged parents.
“I knew my mother had devoted her life to me. In mymind, I knew my behavior was not good. When she
wants me to do something for her, I can do nothing.”
Being perceived as incompetent by others

Medical professionals were considered to treat participants as incompetent persons. In some cases, explanations of prognosis and self-care methods were made toparents or a spouse, rather than to the participants
themselves. Four participants had been rejected for rehabilitation opportunities because medical professionals
considered that it was meaningless to admit persons“who could not even press the nursing button.” There
was a participant who had to go to a long-term facility
because a municipality considered that he did not havethe ability to live in the community because he could
not manage his toileting by himself.

Discrediting self in dependence

Participants suffered from feelings of being a burden on
their family because they thought they chained theirfamily to the injury and to living a restricted life to carefor them. On the other hand, mothers and wives voluntarily took on their responsibilities as caregivers and inspecific cases, a mother quit her job and a wife took acourse toward a license in caregiving. A participant said
that if his mother had not taken care of him, his parents
would feel embarrassed if neighbors came to persuade
them to look after their son.
“As you know, the countryside has a closed side.
That’s why it would breach customs if my family did
not take care of me.”Participants themselves considered that they had to endure restricted life conditions in order to save parents’faces, when their needs did not meet the family caregivers’
intentions. As a pattern of self-determined obedience,some participants considered that they had to postpone
their plan to live independently because they knew parents
wanted to take care of them as long as possible. Participants stated that living with family caregivers was stressful,
because they had to take parent’s needs into consideration.

“Municipality workers also did not know what to do andthey told me to go to a long-term facility. I declined,saying that I wanted to manage my living by myself.”
Participants also felt that they were treated by family
as a person who did not have the right to enjoy casualsocial interactions. In most cases, participants who lived
with their family did not have the right to decide how tospend their money. In particular, husbands with injury
complained that they lost their monetary control because their family members perceived them to be incompetent because of their lost physical ability to earnmoney, which in turn led the family members to makedecisions on expenses.
“I cannot go drinking freely. I want to go to B
(district). . . .My wife and my son told me, “You did asilly thing. What will you do, since you don’t earnmoney?”
Theme 3: Taking time in performance
Taking time in accomplishment“I personally would rather have my life managed by shiftsof paid attendants. As for my parents, they have a desire
to be involved in my care as long as they are active.”

Time was a source of frustration in participants’ everyday
lives. Completing their everyday needs by themselves took
hours, even for those who could propel their wheelchair.
Some of the participants stated that they stopped using theirown body to pursue goals, even though they were afraid oflosing the physical abilities learned through rehabilitation.

In addition to the conflict on the management of careservice, some participants saw their relationships with

“Because the time (for paid care service) is fixed, if I
have to do something within the fixed time, forIde-Okochi et al. BMC Public Health 2013, 13:69
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example, brushing my teeth, I can do it by myself, but
it takes a long time.”

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If my body doesn’t work, then I may use theattendant.”

Taking time in reaching normalcy

Developing independence

It took decades for participants to reconstruct their life
as being as normal as prior to the injury. A participant
said that it took 20 years from the onset of injury until
his bladder infection eased, after a urethral catheter at
the time of his last hospitalization replaced intermittent
catheterization with his mother’s help. Another participant spoke of his long struggle with a skin disorder that
inhibited his social participation.

Six participants started living independently after being
torn between the necessity of being cared for and asense of guilt in becoming a burden on family members.
The experience of managing their life without family
members’ support made participants competent enoughto live alone after the death of their parents. Some participants also stated that independent living was necessary
for having a good family relationship.

“When I gradually started social participation, I had
pressure sores again. . . .I imagined that I could go
here and there if I did not have pressure sores.”“It was a big change for me to talk with my parents
equally. I had not allowed my parents to be chained
to my injury. I think we can now understand eachother more deeply. It is not good to discuss
everything with them because I sense that I could be aconstant burden.”Time was crucial for participants to get accustomed tohealth management and to nurture their wish for social
participation. In one participant’s case, a decade had passed
since he went out on casual occasions other than seeing aphysician. Family members also required time to modify
their perception of caregiving. It took years for family
members of participants to give up their role as a main
caregiver, mainly because of deteriorating health and age.
“Until then, my mother had looked after me all thetime, but she got old and it’s hard for her”
Theme 4: Restoring competency
Finding retained abilities

Participants found that they could reach the goal by using
their own body in modified methods of self-care learned
through rehabilitation. One participant found that she
could still fulfill a social role as a housewife by adjusting her
body to a remodeled kitchen. Another found that he could
still go bowling in a wheelchair on an excursion for persons
with disabilities. Praise not only from his wife, but also fromthe civil servants who organized the excursion made him
feel more competent in his retained physical abilities.
“They (the civil servants) said, ‘you too can do it, becausethat person was able to do it’. When I tried to make arunning start and gather speed like an able-bodied
person, I couldn’t, but I could do it when I did it slowly.”
Participants found that they could achieve a goal byusing someone as an alternate for their injured body.
Participants did not interpret using paid caregivers negatively because it meant that they still had the intellectual
ability to manage paid workers.
“I think I have to manage by using my brain insteadof using my body. The goal is that I finish something.

Participants felt that self-competency was strengthened by a family member’s positive assumptions about
their management skills. A participant who had lived in
the countryside described how it was pleasant to learn
that his parents did not have any anxieties about him living alone, and that they boasted about him to others
who had insisted on the parents taking care of him.
“I am delighted that my parents do not have anyanxieties about my independent living with this body.”
Theme 5: Transcending limitations of disability
Seeing self from a new perspective

Encounters with people such as those with poliomyelitis,
caregivers at care facilities, and ordinary citizens obliged
participants to reflectively consider the definitions ofhuman beings and the self. It was not until participants
could see their self from a new perspective that they
could re-enter the nondisabled world. When talking witha hospital nurse, one of the participants said that it was
not acceptance of the disability itself but the realizationthat he was 25 years old and should go out at his will.
“I said to a nurse, “I cannot wait to go out, but I haveto ask someone to help me eat, and I have no courage
to ask”. Then, the nurse said, “You are 25 years old.
What does a 25-year-old adult say?””
Focusing on a new joy in life was another way for participants to see themselves and the world from a newperspective. A participant who sustained his SCI when
he was 15 years old stated that his life enjoyment was
initially affected not so much by his disability but by thecomments of an art teacher telling him that he was shortIde-Okochi et al. BMC Public Health 2013, 13:69
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on art talent, which had made him deeply depressed forthe first time since the accident occurred.
Setting a new social goal

Participants spoke of their will to be connected to society through labor, social networking, self-help activitiesor the disability rights movement. Except for two participants, who were employers, the participants’ wages wereless than the amount of government-funded disability
pension (syogai kiso nenkin). A participant who looked
for open employment said that he earned only 3,000
Japanese yen (< 40 US dollars) a month for 5 to 6 hours
work inputting data, until the company went into bankruptcy. Despite the low wage, he continued to look foropen employment because he saw the highest value insocial participation through working.
Despite limited social opportunities other than routine
visits to a day care facility, a participant interpreted hislife with disability positively because he could enjoy
making contact that he thought the injury had provided.
“I look forward to this kind of occasion. Like you, I
can talk with girls. This is also a part of my pleasure.”
For some participants, activities related to their selfhelp group were the priorities in their modified social
goals. A participant spoke of his intention to take part in
activities to support other persons with disabilities toachieve social participation.
“The one who rarely goes out should, I think, take thechance to go out, even for only 10 minutes. With that,
I guess not only the person, but also the family feelrefreshed.”

Discussion
We have presented a study that focused on the lives ofindividuals with CSCI in Japan. This qualitative study
was designed to understand the impact of CSCI on the
lives of affected persons, in particular, how these persons
make sense of, and adjust to their injury rather thanbeing shaped by the disabling consequences of their SCI.
In the process of life reconstruction, the negative influence of Discrediting self in dependence could not beeased in a short time, because it was a social obligation
for both family and participants to take care of/be takencare of at home. It was not socially expected for persons
with severe physical disability to live independently.
However, their dependent status made some participants
refrain from both being assertive with their family caregivers and being socially active. That is why, for someparticipants, Developing independence was an essential
step in becoming socially reintegrated.

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Source of struggles: possible explanations andcomparison with other studies

Our findings indicate that participants’ illness experience
was a life-long struggle to make sense of their illness
and manage their lives in spite of the injury. The theme
Being at a loss is in keeping with Yoshida’s [8] discussionof self-reconstruction as a continuous process of adjustment and DeSanto-Madeya’s [9] presentation of themeaning of living with SCI as a continuous learning
process. The theme Taking time in performance is similar to Corbin and Strauss’s ‘biographical time’ [17] inthat persons with chronic illness or disability suffer fromthe fact that they might waste time because they could
not accomplish the attempted necessary tasks of living
because of their illness or disability.
As for the specific aspect in Japan, in the theme Discrediting self by self and others, the current results suggest that family members and healthcare professionals
tended to cause the participants to internalize more
stigma by expecting them to be entirely dependent,
whereas persons with chronic health disorders in American society were expected to fulfill those responsibilities[5]. It is a matter of course for persons with CSCI to beprovided care for self-management [19]. However, we assume that Japanese women’s social status as a caregiver
had in part influenced the participants’ autonomy because it is a mother’s obligation to protect their disabledchildren, although it often results in suppression of thedisabled persons’ views [22].
Process of reconstructing self and lives: possible
explanations and comparison with other studies

Developing independence was also important for someparticipants to restore competency, particularly those
who incurred their injury at a young age. Because they
were robbed of their autonomy by family caregivers, it
was important for them to live separately from theirfamily to prove their competency. Between countries,
there are different reasons for conflict between family
members. American family members expect persons
with chronic illness to maintain independence even after
the onset of the illness [5]. Conversely, Japanese family
members expect persons with disabilities to entrust family members with their care, because family intentions
overlay a person’s will [23]. Although these findings
imply sociocultural differences in family relationships,
this study agrees with a number of others that demonstrate the importance of the impacts of family relationships on the consequences of disability [9,12,22,23]. This
study supports the need to continue to address theimplications of changes in family relationships after the
onset of disability.
In the process of developing a new concept of self inorder to positively interpret the consequences of disability

Ide-Okochi et al. BMC Public Health 2013, 13:69
http://www.biomedcentral.com/1471-2458/13/69[5,8,9], Corbin and Strauss [17] demonstrated that somepeople not only reach the ‘stage’ of acceptance, but also go
on to a state of ‘transcendence’. In this state, they go beyond limitations of their body through finding a real joy inliving. Some of the participants may have reached thisstate of transcendence [17] by looking for modified social
goals [10,11]. Our findings indicate that not only throughlabor [8], but also through various forms of social participation, can participants’ self-worth be enhanced. Taking
into consideration that persons with disabilities in Japanare more house-bound [14] and social inclusion is not thenorm [23], it is necessary for future research to further determine what persons with CSCI want to pursue as theirlong-term objective and how they can realize it.
Implications for the role of professionals

Persons with disabilities and their families in Japan are
reluctant to contact social services to obtain practical support because taking care of family by family members isthe socially accepted behavior [22,23]. Instead of practicalsupport, family caregivers of persons with disabilities expect health professionals to support them emotionally withpraise [23]. We suggest that health professionals in Japan
should consider both roles in supporting persons with disability: providing emotional support for family caregivers
who support persons with disability, and changing the social norms of caregiving to let society accept more autonomy and independence for persons with disability.

Page 9 of 10

meaning through meaningful interactions with significant
others. In particular, the impact of relationships between
family members on the process of accommodation was
highlighted. Social participation was important for enabling persons with CSCI to transcend the limitations of
their disability. Japanese healthcare professionals can be aresource for persons with injury to find a way to cope with
their disability through meaningful interactions. Healthcare policies that enable healthcare professionals to becontinuously involved with persons with disability should
be considered and implemented.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
AI designed the study, collected and analyzed data, and drafted themanuscript. YY helped to conceive the study, participated in study designand helped to review the manuscript. ET helped to conceive the study andhelped to review the manuscript. KF and TK helped to review themanuscript. All authors read and approved the final manuscript.
Acknowledgments
Special acknowledgement must be given to all the study participants forgenerously narrating their illness experience for this study. We express our
gratitude to the members of self-help groups and the staff of the Iyo
visiting-home health care provider who helped locate participants.
Author details
1
Department of Nursing, School of Medicine, University of Ehime, Ehime,
Japan. 2School of Social Welfare, Nihon Fukushi University, Aichi, Japan.
3
Graduate School of Nursing, School of Medicine, Yokohama City University,
Kanagawa, Japan. 4Graduate School of Nursing, Osaka City University, Osaka,
Japan. 5Department of Social Welfare, Faculty of Humanity, Seitoku
University, Tokyo, Japan.

Limitations of this study

Because the process includes outcomes in nature [18], asYoshida [8] confirmed as being a limitation of studies of
illness experience, the relationships between process andoutcome are ambiguous in this study. This study supports
the need for a longitudinal analysis of impact, coping
process and psychological growth after the onset of injury.
Limitations derived from the sample should also be
noted. The sample in this study was more male-dominant
than samples in other studies [8,9,24], which had similar
gender ratios of about 4:1 to national SCI statistics. The
findings of this study may therefore only be applicable tothe male population. Compared with respondents in aprevious study in Japan [14], the participants of this study
probably had more chance to meet with healthcare professionals and paid caregivers who provided social support.
The impact of financial status on the process of finding
positive meaning in disability should be further exploredin the Japanese population.

Conclusions
This study focused on the illness experience of people
with CSCI in a Japanese context. It was not only theirsuffering, but also an ongoing process in which theyfound continuity with the nondisabled self, and positive

Received: 4 July 2012 Accepted: 23 January 2013
Published: 24 January 2013
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