Illness experience of adults with cervical spinal cord injury in Japan: a qualitative investigation.

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by  Ide-Okochi, Ayako

Ide-Okochietal.BMCPublicHealth2013,13:69
http://www.biomedcentral.com/1471-2458/13/69
RESEARCH ARTICLE Open Access
Illness 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 theillness experience from
a layperson’sor insider’s perspective. One such area for exploration would include patient-centered research on
traumatic SpinalCord Injury (SCI), a condition associated withpermanent physical disability requiring long-term and
often complex health care. The chronicity ofSCI can, inturn, 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, theprocess ofadjustment among people with cervical SCI (CSCI) living in Japan
maybe different because of therestrainedconditions oftheirsocialparticipation and theexcessive burden on
family caregivers. The purpose of this study was to examine theimpact ofinjury and theprocess of
accommodationin people withCSCI in Japan.
Methods: Semi-structured home interviews were conducted with 29 participants who were recruited from a
home-visit nursing care provider and three self-help groups. Interviews were recorded,transcribed and analyzed
based onthegrounded theory approach.
Results: Five core categoriesemerged from theinterviewdata:being at a loss, discreditingself by selfand others,
taking time inperformance, restoring competency,and transcending limitationsof disability.Overall, theprocess by
which participants adjusted to and found positive meaning intheir lives involved a continuous search for
comfortable relationships between self, disability and society.
Conclusions: The results of this study suggestthat persons withCSCI do not merely have disrupted lives, but find
positive meaning through meaningful interactions. Family members added to thediscredit of selfby making the
injured person entirely dependent on them. Gaining independence from family members was the key to restoring
competency inpeople with CSCI. At thesame time, social participation was pursued for transcending the
limitations of disability. The results also imply that social issues affect how people interprettheir disability. These
findings suggestthat public health policy makers should recognize theneed to enhance independence in people
withdisability as well as changethesocial assumptionsabout their care.
Keywords: Illness experience, Biographicalreinforcement, Loss of self, Social participation, Social relationship,
Spinal cord injury
*Correspondence:[email protected]
1DepartmentofNursing,SchoolofMedicine,UniversityofEhime,Ehime,
Japan
Fulllistofauthorinformationisavailableattheendofthearticle
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Background Based on these studies, the factors that may be relevant
In Japan, it is estimated that more than 100,000 persons to the achievement of successful emotional adjustment
sufferfromspinalcordinjury(SCI),andthat5000persons post-SCI are presented. First, it is considered that social
incuraSCIeachyear[1].Ofthesepersons,theproportion participationis essentialforthe achievement of successful
with cervical SCI (CSCI) is estimated at about 60% [2]. accommodation [8,10,11]. In particular, some authors
PeoplewithCSCIexperienceavarietyofdifficultiesresult- [8,10-12] have focused on social participation through
ing from a sudden onset of disability. These difficulties, labor, because working provides opportunities not only to
which include motor deficits, sensory deficits, and bowel obtain financial security, but also to enhance self-worth
and bladder dysfunction, require ongoing medical man- through meaningful interactions in the workplace [12].
agement. Therefore it is crucial that healthcare profes- Second, it is considered that having a strong family bond
sionalsunderstandandtakeheedofthelayperson’sillness helps people with SCI heal their anxiety, get to know the
narrativestodeliverpatient-centeredhealthcare[3]. injury,andreconstructtheirlifeafterinjury[9,12].
A number of authors have attempted to illustrate not However, these findings may not be applicable to per-
only the impact of chronic illness on the lives of those sons with CSCI inJapan.In terms of social participation,
experiencing it, but also how they try to make sense of it has been estimated that people with a disability oc-
their illness. Bury [4] regarded chronic illness as consti- cupy only 1.65% of the current Japanese labor force in
tuting a major disruptive experience in the past, present, private companies [13]. Social participation and even
and future — what he termed a‘biographical disruption.’ just leaving the house were identified as difficult for
Charmaz [5] developed the idea of ‘loss of self’ [5], in ventilator-dependent persons with CSCI because of a
which people with physical disabilities experience the lack of aides other than family caregivers [14]. With re-
interaction between self and significant others as having spect to the strong family bond [9], relying on caregivers
anegativeimpact ontheirsocial lifeandself-image. for self-care may negatively influence the psychological
In contrast to these studies, which presented the nega- outcomesofpersonswithSCIinJapan.Specifically,about
tive impact of chronic illness on personal relationships 75% of family caregivers in Japan, most of whom are the
and esteem [4,5], some studies found that the illness ex- parentorspouse[15],providecareformorethan19hours
perience can also have positive consequences. For ex- per day for care recipients with SCI [14]. This is in com-
ample,inonestudy,peoplesufferingfromarthritistried parison to Western studies which have reported family
to interpret the cause ofillnessinrelation to theirbiog- caregivers as providing less than 10 hours of care per day
raphy, and employed strategies to create a sense of co- [14]. Consequently, the care burden for Japanese families
herence — a process Williams [6] termed ‘narrative issignificantlyhigherandlikelytoproducerestrictivecon-
reconstruction.’ Similarly, in a study of HIV-positive sequences in the lives of people with CSCI, including less
men, illness onset was associated with positive conse- independenceindecisionmaking[16].
quences which the researchers termed ‘biographical The goal of this study was to characterize how per-
reinforcement’ [7]. Specifically, men who had lived with sons with CSCI living in Japan manage their illness,
hemophilia and were infected with HIV through blood achieve a sense of control over their life, and find
transfusion did not experience HIV as biographically positive meaning and continuity from their former life
disruptive. This was in comparison to men who were despite their injury — what some authors have termed
infected after practicing unprotected sex with a homo- ‘accommodation’[10,11,17].Understandinghowtheyhave
sexual partner. The authors explain that the former successfully adjusted to their lives and found positive
group experienced ‘biographical reinforcement’ as they consequences may hold important lessons about health-
only had to modify their already adjusted life and care policies that could support people with SCI not only
biography as a result of their chronic condition. tosurvive,butalsotofindpositivemeaningintheirlife.
A few studies have explored the positive experience of
living with SCI. Based onCharmaz’s ‘loss ofself’concept Methods
[5], Yoshida [8] argued that persons with traumatic SCI Groundedtheory
experience a pendular process between the nondisabled Data were collected and analyzed based on the grounded
and disabled self. Furthermore, Yoshida [8] argued that theoryapproach[18].Groundedtheoryinvolvestheappli-
the outcomes of identity reconstruction were ‘loss,’ ‘sus- cationofempiricalmethodologytotheanalysisofthedata,
tainment,’ ‘integration,’ ‘continuity’ and ‘development of and it is used for the purpose of building theory from the
the self.’ Based on a phenomenological study, DeSanto- data. According to the grounded theory approach, theory
Madeya also suggested that persons with SCI and their is not developed merely on description, but also by an ar-
family members positively interpreted their life with dis- rangement of categories (concepts) that are systematically
ability as a continuous process of learning which might interrelated to present an explanation of the phenomenon
provideafamilybond andanewsocialgoal[9]. [18].Thismethodologywasusedbecausethisstudyaimed
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notonlytodescribetheprocessofadjustment,butalsoto Interview
delineate the relationships between concepts found in the Interviews were conducted over a 5-month period (April
process of adjustment. In this study,‘process’ refers to ac- to August 2009). The interview guide was developed
tivities, interactions, and emotional responses related to aroundtworesearchtopics:1)theimpactofinjuryonpar-
theinjury. ticipants’lives;and2)howparticipantsachievedasenseof
controlovertheirlifeandfoundpositivemeaningandcon-
tinuity from their former life despite their injury. For this
Studysampleandsamplingstrategy purpose, the study focused on: 1) perceptions of self with
The study sample was obtained through professional CSCI; 2) performance of self-care and self-management of
and personal contacts. Following written approval of the symptoms;and3)conditionsofsocialparticipationandso-
University of Tokyo’s Research and Ethics Committee, a cialrelationships.
query letter was sent to 31 eligible participants with Although the self is constructed separatelythrough so-
CSCI who were interested in being interviewed. Their cial relations, at the same time there is a whole self or
names and addresses were given with consent by repre- identity that is an integration of various aspects of self
sentatives of one home-visit service provider and three and is consistent throughout the life cycle [8,17]. The
self-help groups. The home-visit service provider was ‘self’ concept is used in this study as an organization of
located in Ehime Prefecture. The three self-help groups various aspects of self that havereshaped after the injury
were located in Ehime Prefecture, Hyogo Prefecture and andconstituteidentity.
Osaka Prefecture. Ehime Prefecture is primarily rural, All interviews, with one exception, were conducted in
Osaka Prefecture is urban and Hyogo Prefecture has ele- theparticipant’shome.This was an ideallocationbecause
ments of both. These self-help groups developed under it enabled the provision of a comfortable atmosphere and
the influence of the independent living movement that allowedtheresearchertoobtaindatathroughobservation
originated and developed in the US [19]. Japanese people [9]. Data were collected by the principal researcher in
withdisability who practiceindependent livingusually es- audiotaped and transcribed individual interviews. The
tablish a Center for Independent Living, which enables principalresearcherobservedtheparticipants’interactions
themtosecuretheavailabilityofpersonalassistants[20]. with caregivers and this data provided clues for interpret-
The query letter included a brief description of the ingtherelationshipsbetweenconcepts.
study and asked for participation. Inaddition, theprinci-
pal investigator telephoned all potential participants to Analysis
explain the study purpose and schedule a mutually con- In the grounded theory approach, analysis involves open
venient date and time to meet. Although the process of coding,axial codingandselective codingtodevelop ana-
sampling was not theoretically ideal, this study’s system- lytic categories [18]. Coding means ‘deriving and devel-
atic data collection process was considered acceptable, oping concepts from data’ [18] through constantly going
because constant comparisons between concepts were from data toconcepts.
still beingmadeduringanalysis[18]. Open coding begins with reading the transcripts several
Patient demographic data are presented in Table 1. The times then dividing the transcripts into codes/concepts,
finalsampleconsistedof27menandtwowomenwhosus- whicharelatercomparedwithothercodes/conceptsderived
tained a traumatic CSCI. The participants recruited from fromotherparticipants’transcriptsintermsofcharacteristics
the home-visit service provider included elderly persons and modes. Axial coding is used to interrelate codes/con-
who incurred their injury at age 40 or older. Conversely, ceptsforthepurposeofmakingamoreabstracthypothesis,
participants recruited from the self-help groups tended to whichisderivedfromconstantcomparisonbetweencategor-
have incurred the injury in their teens or 20s. Compared ies/themes.Selectivecodingisusedtodevelopcorevariables
withtheratioofstudentparticipantsreturningtothesame thatintegratecategoriesintoatheoreticalconstruction.
school (N=7, 53.8%), it was difficult for the adult partici- Data were considered saturated when no further codes
pantswhowereemployedatthetimeofonsettoreturnto could be identified, the existing categories were coher-
thesamejob(N=0). ent,andtherewereenoughvariations explainingthe cat-
Seven out of 29 participants had their accidents at egories. Although data saturation had been achieved
work and qualified for compensation. Three participants after the completion of 28 interviews, interviews contin-
were dependent on a ventilator 24 hours a day. Seven ueduntiltheresearcherfinishedinterviewingallofthose
participants could hold their torsos without a thoracic who hadalreadyvolunteeredtoparticipateinthestudy.
belt and five could walk with a stick or by holding a
handrail. The other 22 participants could not hold their Methodologicalrigor
torsos. Thirteen participants could propel their wheel- Credibility, transferability, dependability, and confirmabil-
chair andtwo coulddrive amodifiedcar. ity are the criteria used to support the rigor of qualitative
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Table1Demographicprofileoftheparticipants(N=29)
Characteristics Number Percent
Gender Male 27 93.1
Female 2 6.9
Age Mean±SD(range) 48.1±12.4(26–77)
Ageatinjury Mean±SD(range) 30.7±16.3(14–69)
Durationofdisability Mean±SD(range) 16.9±9.9(4–36)
Levelofinjury C1 2 6.9
C3 6 20.7
C4 10 34.5
C5 6 20.7
C6 3 10.3
Unknown 2 6.9
Typeofinjury Complete 17 58.6
Incomplete 12 41.4
Causeofinjury Roadtrafficaccident 15 51.7
Sportingaccident 9 31.0
Fall 3 10.3
Otheraccident 2 6.9
Employmentatthetimeofonset Employed 14 48.3
Returnedtothesamejob 0
Student 13 44.8
Returnedtothesameschool 7
Retired 2 6.9
Employmentatthetimeofinterview Employed 10 34.5
Unemployed 19 65.5
Maritalstatus Married 10 34.5
Single(nevermarried) 17 58.6
Divorced 2 6.9
Householdcomposition Withanyfamilymembers 22 75.9
Livesalone 7 24.1
Maincaregiver Familymembers 18 62.1
Spouse 9
Mother 6
Father 2
Siblings 1
Paidcaregivers 11 37.9
Receivinganykindofpension Yes 26 89.7
No 3 10.3
research [21]. Credibility was demonstrated through a) wastrulyreflectiveoftheirexperience.Allfiveparticipants
memberchecking;b)peerdebriefing;c)prolongedinvolve- recognized the themes as true reflections of their experi-
ment; d) persistent observation; and e) triangulation [21]. ence of living with CSCI. With respect to b) peer debrief-
Withrespecttoa)memberchecking,fiveparticipantswere ing,aqualitativeresearchexpertcheckedthatthedataand
contacted by e-mail and were given a summary of their interpretation were coherent and audited the study
transcripts and of the emergent themes developed from process.Asforc)prolongedinvolvement,andd)persistent
thedataofallparticipants,toensurethattheinterpretation observation, the principal author became acquainted with
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18 participants prior to the individual interviews and had demonstrated that they could not understand how they
opportunities for observational study over the 5 month had an “illness” that could not be cured. A participant
durationofthestudy.Moreover,triangulationwasensured stated, “I did not have any idea what would happen if a
because data were collected through both interviews and vertebrate animal had damage to their spinal cord.” This
observation.Differencesinthecharacteristicsofparticipant participant spoke of his disappointment when he could
groups (recruited through home-visit service vs. through not find even a small improvement after surgery per-
self-helpgroups)alsodemonstratedvariationsthatcontrib- formed byphysiciansayearafter theonset ofdisability.
uted to the construction of an abstract explanatory frame. Disorders in physiological function and mobility were
Transferabilitywasaccomplishedbyprovidingathorough, mentioned as current sources of disruption. A participant
dependable decision trail to demonstrate that the research spoke of his cynical perception of the body that did not
findingshavemeaningtopeopleinsimilarconditions.De- obeyhiswill.Boweldisordersbotheredhimevenwhenhe
pendability was ensured by providing a written decision had become competent in managing bowel symptoms
trailof howtheresearchermadecategoriesfromrawdata. afteradecadeofstruggle.
Confirmability was accomplished by providing a thorough
descriptionofhowdatawerecollected. “Ihadmanagedmyevacuation.However,inshort,I
cametohavemorebowelincontinence.Ontheway,
Ethicalconsiderations thingshavechangeddramaticallyandIlostcontrolon
Thestudywasconductedafterapprovalwasobtainedfrom theway.”
theResearchEthicsCommitteeofTheUniversityofTokyo.
All participants were informed of the study objectives and
design and gave their written consent for the interviews. Unknownlives
Theywerefreetoterminatetheinterviewiftheywished. Participants also spoke of their struggle in dealing with
the uncertainty brought by the injury into their lives. At
Results the time of discharge, participants and their family
Five main themes emerged from the data. These themes members who did not own a house struggled with find-
revealedtheimpactofCSCIonpeople’slivesandhowthey ing an apartment. Participants and their family members
reconstruct their life after the onset of disability. The five were also anxious about living at home with a small
themes were: a) being at a loss; b) discrediting self by self number offamily memberstaking responsibilityfor care.
andothers;c)takingtimeinperformance;d)restoringcom-
petency; and e) transcending limitations of disability. These “Iamfrom A(prefecture).Icouldn’tliveevenifI
themesandtheirsubcategoriesarepresentedinTable2. returnedtoA. That’swhyIhavelivedinahospital all
the time.”
Theme1:Beingataloss
Unknownbody Participantsalso spokeoftheiruncertaintyinfinding a
Participants constantly experienced physical disorders way to make a living. Unknown future financial status
that were unknown before the injury. Immediately after was stressed by participants who were not eligible for
the injury, participants perceived that their “legs did not disability pensions. They were afraid of living under so-
move” and/or that they “could not breathe.” Participants cial security. Uncertainty about the future after their
Table2Themesandsubcategories
Theme Subcategories
Beingataloss Unknownbody
Unknownlives
Discreditingselfbyselfandothers Discreditingselfinphysicalabilityandappearance
Discreditingselfindependence
Beingperceivedasincompetentbyothers
Takingtimeinperformance Takingtimeinaccomplishment
Takingtimeinreachingnormalcy
Restoringcompetency Findingretainedabilities
Developingindependence
Transcendinglimitationsofdisability Seeingselffromanewperspective
Settinganewsocialgoal
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parents were deceased was also expressed by partici- family as strange and conflicting because they were
pantswho were caredfor bytheirparents. taken care of by their aged and ailing mothers, while it
was social obligation for a son or daughter to take care
Theme2:Discreditingselfbyselfandothers oftheiragedparents.
Discreditingselfinphysicalabilityandappearance
Participantsstressedtheirperceptionofincompetencewhen “Iknew mymotherhaddevoted herlifetome. Inmy
theycomparedthemselveswiththeirformerselfasanable- mind, Iknewmybehaviorwasnot good. When she
bodied person. Participants stated that prior to the injury, wantsmetodosomething for her,Icandonothing.”
they were responsible for managing their life. However, be-
causeoftheinjury,participantsstatedtheybecameaperson Beingperceivedasincompetentbyothers
whocouldnotdoanythingwithouttheaidofsomeoneelse. Medical professionals were considered to treat partici-
Participants scornfully described their body with CSCI pants as incompetent persons. In some cases, explana-
in terms such as ‘a disabled body on a wheelchair.’As an tions of prognosis and self-care methods were made to
example of self-discrediting, one participant who antici- parents or a spouse, rather than to the participants
pated being stigmatized tried not to take part in a fun- themselves. Four participants had been rejected for re-
eral, eventhoughitisa social obligation forthe onlyson habilitation opportunities because medical professionals
tobealeader ofthe ceremony. considered that it was meaningless to admit persons
“who could not even press the nursing button.” There
“Tobehonest,withthis disabledbody, Ididnot want was a participant who had to go to a long-term facility
toconductmyfather’sfuneral.Becausemybodyis because a municipality considered that he did not have
disabled,Ihated toattend hisfuneral.” the ability to live in the community because he could
not manage histoileting byhimself.
Discreditingselfindependence
Participants suffered from feelings of being a burden on “Municipalityworkersalsodidnotknowwhattodoand
their family because they thought they chained their theytoldmetogotoalong-termfacility.Ideclined,
family to the injury and to living a restricted life to care sayingthatIwantedtomanagemylivingbymyself.”
for them. On the other hand, mothers and wives volun-
tarily took on their responsibilities as caregivers and in Participants also felt that they were treated by family
specific cases, a mother quit her job and a wife took a as a person who did not have the right to enjoy casual
course toward a license in caregiving. A participant said social interactions. In most cases, participants who lived
that if his mother had not taken care of him, his parents with their family did not have the right to decide how to
would feel embarrassed if neighbors came to persuade spend their money. In particular, husbands with injury
themtolookafter theirson. complained that they lost their monetary control be-
causetheirfamilymembersperceivedthemtobeincom-
“Asyouknow, the countryside hasaclosed side. petent because of their lost physical ability to earn
That’swhyitwould breach customsifmyfamily did money, which in turn led the family members to make
not take care ofme.” decisionsonexpenses.
Participants themselves considered that they had to en- “Icannotgodrinking freely. Iwant togotoB
dure restricted life conditions in order to save parents’ (district)....Mywife andmyson toldme,“You dida
faces,whentheirneedsdidnotmeetthefamilycaregivers’ silly thing. What willyoudo,since youdon’tearn
intentions. As a pattern of self-determined obedience, money?”
some participants considered that they had to postpone
theirplantoliveindependentlybecausetheyknewparents Theme3:Takingtimeinperformance
wanted to take care of them as long as possible. Partici- Takingtimeinaccomplishment
pantsstatedthatlivingwithfamilycaregiverswasstressful, Time was a source of frustration in participants’ everyday
becausetheyhadtotakeparent’sneedsintoconsideration. lives. Completing their everyday needs by themselves took
hours, even for those who could propel their wheelchair.
“Ipersonallywouldratherhavemylifemanagedbyshifts Someoftheparticipantsstatedthattheystoppedusingtheir
ofpaidattendants.Asformyparents,theyhaveadesire own body to pursue goals, even though they were afraid of
tobeinvolvedinmycareaslongastheyareactive.” losingthephysicalabilitieslearnedthroughrehabilitation.
In addition to the conflict on the management of care “Because thetime (forpaid careservice)isfixed,ifI
service, some participants saw their relationships with havetodosomething within thefixed time,for
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example,brushingmyteeth, Icandoitbymyself,but Ifmybodydoesn’twork,then Imayusethe
ittakesalong time.” attendant.”
Takingtimeinreachingnormalcy Developingindependence
It took decades for participants to reconstruct their life Six participants started living independently after being
as being as normal as prior to the injury. A participant torn between the necessity of being cared for and a
said that it took 20 years from the onset of injury until sense of guilt in becoming a burden on family members.
his bladder infection eased, after a urethral catheter at The experience of managing their life without family
the time of his last hospitalization replaced intermittent members’ support made participants competent enough
catheterization with his mother’s help. Another partici- to live alone after the death of their parents. Some parti-
pant spoke of his long struggle with a skin disorder that cipants also stated that independent living was necessary
inhibitedhis social participation. forhavingagoodfamily relationship.
“WhenIgraduallystartedsocial participation,Ihad “Itwasabigchangefor metotalkwith myparents
pressuresores again....IimaginedthatIcouldgo equally.Ihad notallowed myparentstobe chained
hereandthere ifIdidnothavepressure sores.” tomyinjury. Ithinkwe cannow understand each
othermoredeeply.Itisnot goodtodiscuss
Time was crucial for participants to get accustomed to everythingwith thembecause Isense thatIcould bea
health management and to nurture their wish for social constantburden.”
participation.Inoneparticipant’scase,adecadehadpassed
since he went out on casual occasions other than seeinga Participants felt that self-competency was strength-
physician. Family members also required time to modify ened by a family member’s positive assumptions about
their perception of caregiving. It took years for family their management skills. A participant who had lived in
members of participants to give up their role as a main the countryside described how it was pleasant to learn
caregiver,mainlybecauseofdeterioratinghealthandage. thathisparentsdidnothaveanyanxietiesabouthimliv-
ing alone, and that they boasted about him to others
“Untilthen,mymotherhadlookedaftermeallthe who hadinsistedontheparentstaking careof him.
time,but shegotold andit’shardforher”
“Iamdelightedthatmyparentsdonot haveany
Theme4:Restoringcompetency anxietiesabout myindependent livingwiththis body.”
Findingretainedabilities
Participants found that they could reach the goal by using Theme5:Transcendinglimitationsofdisability
their own body in modified methods of self-care learned Seeingselffromanewperspective
through rehabilitation. One participant found that she Encounters with people such as those with poliomyelitis,
couldstillfulfillasocialroleasahousewifebyadjustingher caregivers at care facilities, and ordinary citizens obliged
bodytoaremodeledkitchen.Anotherfoundthathe could participants to reflectively consider the definitions of
stillgobowlinginawheelchaironanexcursionforpersons human beings and the self. It was not until participants
withdisabilities.Praisenotonlyfromhiswife,butalsofrom could see their self from a new perspective that they
the civil servants who organized the excursion made him couldre-enterthenondisabledworld.Whentalkingwith
feelmorecompetentinhisretainedphysicalabilities. a hospital nurse, one of the participants said that it was
not acceptance of the disability itself but the realization
“They(thecivilservants)said,‘youtoocandoit,because thathewas25yearsoldandshouldgoout athiswill.
thatpersonwasabletodoit’.WhenItriedtomakea
runningstartandgatherspeedlikeanable-bodied “Isaidtoanurse,“Icannot waittogoout,but Ihave
person,Icouldn’t,butIcoulddoitwhenIdiditslowly.” toask someone tohelpmeeat,andIhavenocourage
toask”.Then,thenursesaid,“Youare25yearsold.
Participants found that they could achieve a goal by Whatdoesa25-year-oldadult say?””
using someone as an alternate for their injured body.
Participants did not interpret using paid caregivers nega- Focusing on a new joy in life was another way for par-
tively because it meant that they still had the intellectual ticipants to see themselves and the world from a new
ability tomanagepaidworkers. perspective. A participant who sustained his SCI when
he was 15 years old stated that his life enjoyment was
“IthinkIhavetomanage byusingmybraininstead initially affected not so much by his disability but by the
ofusingmybody.Thegoal isthatIfinishsomething. commentsofanartteachertellinghimthathewasshort
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on art talent, which had made him deeply depressed for Sourceofstruggles:possibleexplanationsand
thefirsttime sincetheaccidentoccurred. comparisonwithotherstudies
Ourfindingsindicatethatparticipants’illnessexperience
was a life-long struggle to make sense of their illness
Settinganewsocialgoal
and manage their lives in spite of the injury. The theme
Participants spoke of their will to be connected to soci-
Being at a loss isin keeping withYoshida’s [8]discussion
ety through labor, social networking, self-help activities
of self-reconstruction as a continuous process of adjust-
orthedisabilityrightsmovement. Exceptfortwo partici-
ment and DeSanto-Madeya’s [9] presentation of the
pants, who were employers, the participants’ wages were
meaning of living with SCI as a continuous learning
less than the amount of government-funded disability
process. The theme Taking time in performance is simi-
pension (syogai kiso nenkin). A participant who looked
lar to Corbin and Strauss’s ‘biographical time’ [17] in
for open employment said that he earned only 3,000
that persons with chronic illness or disability suffer from
Japanese yen (< 40 US dollars) a month for 5 to 6 hours
the fact that they might waste time because they could
work inputting data, until the company went into bank-
not accomplish the attempted necessary tasks of living
ruptcy. Despite the low wage, he continued to look for
because oftheirillnessordisability.
open employment because he saw the highest value in
As for the specific aspect in Japan, in the theme Dis-
social participationthroughworking.
crediting self by self and others, the current results sug-
Despite limited social opportunities other than routine
gest that family members and healthcare professionals
visits to a day care facility, a participant interpreted his
tended to cause the participants to internalize more
life with disability positively because he could enjoy
stigma by expecting them to be entirely dependent,
makingcontact thathethoughttheinjuryhadprovided.
whereaspersons with chronic health disordersinAmeri-
can society were expected to fulfill those responsibilities
“Ilookforward tothiskindofoccasion.Likeyou, I
[5]. It is a matter of course for persons with CSCI to be
cantalkwithgirls.Thisisalsoapartofmypleasure.”
providedcareforself-management[19].However,weas-
sume that Japanese women’s social status as a caregiver
For some participants, activities related to their self-
had in part influenced the participants’ autonomy be-
help group were the priorities in their modified social
cause it is a mother’s obligation to protect their disabled
goals.Aparticipant spokeof his intentionto take part in
children, although it often results in suppression of the
activities to support other persons with disabilities to
disabledpersons’views [22].
achievesocial participation.
Processofreconstructingselfandlives:possible
“Theone whorarely goesout should, Ithink,takethe
explanationsandcomparisonwithotherstudies
chancetogoout,evenfor only10minutes.Withthat,
Developing independence was also important for some
Iguess notonlythe person,but also thefamily feel
participants to restore competency, particularly those
refreshed.”
who incurred their injury at a young age. Because they
were robbed of their autonomy by family caregivers, it
Discussion was important for them to live separately from their
We have presented a study that focused on the lives of family to prove their competency. Between countries,
individuals with CSCI in Japan. This qualitative study there are different reasons for conflict between family
was designed to understand the impact of CSCI on the members. American family members expect persons
lives ofaffected persons, inparticular, how these persons with chronic illness to maintain independence even after
make sense of, and adjust to their injury rather than the onset of the illness [5]. Conversely, Japanese family
being shaped by the disabling consequences of their SCI. members expect persons with disabilities to entrust fam-
In the process of life reconstruction, the negative influ- ily members with their care, because family intentions
ence of Discrediting self in dependence could not be overlay a person’s will [23]. Although these findings
eased in a short time, because it was a social obligation imply sociocultural differences in family relationships,
for both family and participants to take care of/be taken this study agrees with a number of others that demon-
care of at home. It was not socially expected for persons strate the importance of the impacts of family relation-
with severe physical disability to live independently. ships on the consequences of disability [9,12,22,23]. This
However, their dependent status made some participants study supports the need to continue to address the
refrain from both being assertive with their family care- implications of changes in family relationships after the
givers and being socially active. That is why, for some onset ofdisability.
participants, Developing independence was an essential In the process of developing a new concept of self in
stepinbecomingsocially reintegrated. ordertopositivelyinterpretthe consequencesofdisability
Ide-Okochietal.BMCPublicHealth2013,13:69 Page9of10
http://www.biomedcentral.com/1471-2458/13/69
[5,8,9], Corbin and Strauss [17] demonstrated that some meaning through meaningful interactions with significant
peoplenotonlyreachthe‘stage’ofacceptance,butalsogo others. In particular, the impact of relationships between
on to a state of ‘transcendence’. In this state, they go be- family members on the process of accommodation was
yondlimitationsoftheirbodythroughfindingarealjoyin highlighted. Social participation was important for enab-
living. Some of the participants may have reached this ling persons with CSCI to transcend the limitations of
state of transcendence [17] by looking for modified social their disability. Japanese healthcare professionals can be a
goals [10,11]. Our findings indicate that not only through resourceforpersonswithinjurytofindawaytocopewith
labor [8], but also through various forms of social partici- their disability through meaningful interactions. Health-
pation, can participants’ self-worth be enhanced. Taking care policies that enable healthcare professionals to be
into consideration that persons with disabilities in Japan continuously involved with persons with disability should
aremorehouse-bound[14]andsocialinclusionisnotthe beconsideredandimplemented.
norm[23],itisnecessaryforfutureresearchtofurtherde-
Competinginterests
termine what persons with CSCI want to pursue as their
Theauthorsdeclarethattheyhavenocompetinginterests.
long-termobjectiveandhowtheycanrealizeit.
Authors’contributions
AIdesignedthestudy,collectedandanalyzeddata,anddraftedthe
Implicationsfortheroleofprofessionals
manuscript.YYhelpedtoconceivethestudy,participatedinstudydesign
Persons with disabilities and their families in Japan are
andhelpedtoreviewthemanuscript.EThelpedtoconceivethestudyand
reluctant to contact social services toobtain practical sup- helpedtoreviewthemanuscript.KFandTKhelpedtoreviewthe
manuscript.Allauthorsreadandapprovedthefinalmanuscript.
port because taking care of family by family members is
the socially accepted behavior [22,23]. Instead of practical
Acknowledgments
support, family caregivers of persons with disabilities ex- Specialacknowledgementmustbegiventoallthestudyparticipantsfor
pecthealthprofessionalstosupportthememotionallywith generouslynarratingtheirillnessexperienceforthisstudy.Weexpressour
gratitudetothemembersofself-helpgroupsandthestaffoftheIyo
praise [23]. We suggest that health professionals in Japan
visiting-homehealthcareproviderwhohelpedlocateparticipants.
shouldconsiderbothrolesinsupportingpersonswithdis-
ability: providing emotional support for family caregivers Authordetails
1DepartmentofNursing,SchoolofMedicine,UniversityofEhime,Ehime,
who support persons with disability, and changing the so- Japan.2SchoolofSocialWelfare,NihonFukushiUniversity,Aichi,Japan.
cial norms of caregiving to let society accept more auton- 3GraduateSchoolofNursing,SchoolofMedicine,YokohamaCityUniversity,
omyandindependenceforpersonswithdisability. Kanagawa,Japan.4GraduateSchoolofNursing,OsakaCityUniversity,Osaka,
Japan.5DepartmentofSocialWelfare,FacultyofHumanity,Seitoku
University,Tokyo,Japan.
Limitationsofthisstudy
Because the process includes outcomes in nature [18], as Received:4July2012Accepted:23January2013
Published:24January2013
Yoshida [8] confirmed as being a limitation of studies of
illness experience, the relationships between process and References
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cervicalspinalcordinjuryinJapan:aqualitativeinvestigation.BMC
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