"Caring for insiderness": Phenomenologically informed insights that can guide practice.

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by  Todres, Les

International Journal of Qualitative Studies on Health and Well-Being
EMPIRICAL/THEORETICAL STUDY
‘‘Caring for insiderness’’: Phenomenologically informed insights that
can guide practice
LES TODRES, Professor1, KATHLEEN T. GALVIN, Professor2, & KARIN DAHLBERG,
Guest Professor3
1SchoolofHealthandSocialCare,BournemouthUniversity,Dorset,UnitedKingdom,2FacultyofHealthandSocialCare,
University of Hull, Yorkshire, United Kingdom, and 3Sahlgrenska Academy, Go¨teborg University, Sweden
Abstract
Understanding the ‘‘insider’’ perspective has been a pivotal strength of qualitative research. Further than this, within the
moreappliedfieldsinwhichthehumanactivityof‘‘caring’’takesplace,suchunderstandingof‘‘whatitislike’’forpeople
fromwithintheirlifeworldshasalsobeenacknowledgedasthefoundationalstartingpointinorderfor‘‘care’’tobecaring.
Butwebelievethatmoreattentionneedstobepaidtothisfoundationalgenericphenomenon:whatitmeanstounderstand
the ‘‘insiderness’’ of another, but more importantly, how to act on this in caring ways. We call this human phenomenon
‘‘caringforinsiderness.’’Drawingonexistingphenomenologicalstudiesofmarginalcaringsituationsatthelimitsofcaring
capability, and through a process of phenomenologically oriented reflection, we interrogated some existential themes
implicit in these publications that could lead to deeper insights for both theoretical and applied purposes. The paper
providesdirection for practices of caringby highlighting some dangersaswell assome remedies alongthis path.
Key words: Caring, person centred, phenomenology, lifeworld, humanization, individualized care, reflective analysis
(Accepted:4 December 2013;Published:21 January 2014)
Tolstoy and Chekov were on a walk in the spring things are for the person.’’ However,webelieve that
woods when they encountered a horse. Tolstoy more specific attention needs to be paid to this
begantodescribehowthehorsewouldexperience foundationalphenomenoninrelationtocaring:what
the clouds, trees, smell of wet earth, flowers, sun. itmeanstounderstandthe‘‘insiderness’’ofanother,
Chekov exclaimed that Tolstoy must have been a and more importantly, how to act on this in caring
horseinapreviouslifetoknowinsuchdetailwhat ways. We call this phenomenon ‘‘caring for insider-
the horse would feel. Tolstoy laughed and said: ness.’’ There are many qualitative studies already in
‘No, but the day I came across my own inside,
the public arena that, although not directly focusing
I came across everybody’s inside’. (Sutherland,
onthephenomenonwename,couldbeharnessedand
2013, p. 30)
reflecteduponinordertodeepenourunderstanding
of this concern. So we posed the question: In what
Understanding the ‘‘insider’’ perspective has been a
ways can the findings of research help us in arriving
pivotal concern for any applied field where the
at further useful insights that have implications for
human activity of ‘‘caring’’ is important. Such
practice? In this paper, we turn to seven published
understanding of ‘‘what it is like’’ for people from
phenomenological studies with the following reflec-
within their lifeworld has been particularly acknow-
ledged as a foundational starting point for health- tive question in mind: What does each study tell us
relatedcaring(Toombs,2002).Indeed,thenotionof about the phenomenon of ‘‘caring for insiderness’’?.
appreciating or understanding a person’s ‘‘insider- We wanted to pay attention to some rich sources of
ness’’hasbeencitedasoneofeightessentialdimen- phenomenologicalresearchthatalreadyexist.Thisis
sions of what it takes to ‘‘humanise care’’ (Todres, not a systematic literature review but rather an
Galvin&Holloway,2009,p.3):‘‘Tobehumanisto analysis of a group of papers that served to reveal
live in a personal world that carries a sense of how some new depth and detail about ‘‘caring for
Correspondence: L. Todres, Bournemouth University, Royal London House, Christchurch Road, BH1 3LT, Bournemouth, United Kingdom.
E-mail:[email protected]
#2014 L. Todres et al. This is an Open Access article distributed under the terms of the Creative Commons CC-BY 4.0 License (http:// 1
creativecommons.org/licenses/by/4.0/),allowingthirdpartiestocopyandredistributethematerialinanymediumorformatandtoremix,transform,
andbuilduponthematerialforanypurpose,evencommercially,providedtheoriginalworkisproperlycitedandstatesitslicense.
Citation:IntJQualitativeStudHealthWell-being2014,9:21421-http://dx.doi.org/10.3402/qhw.v9.21421
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L. Todres et al.
insiderness.’’ We believe that there is not enough unpredictable. The authors of the study provide
reflection on the meaning and implication of what good descriptions of the professional carers’ under-
sometimes looks like unrelated studies, but which standable feelings of insecurity when there is such
can be meaningfully related to one another when an extreme lack of access to a coherent sense of the
one takes a fresh perspective and where one has a patients’ experience of life from the inside.
particularhuman phenomenon inmind.Within this The way that the professionals proceed is to
spirit, we chose seven articles that used a phenom- attempt to ‘‘use themselves’’ by exchanging ‘‘self’’
enological approach to research and which focused with ‘‘other,’’through a process of trying to imagine
on a range of issues about the challenges and di- whattheywouldhavesaidordoneinasimilarsitua-
lemmas of caring in a variety of settings. We chose tion, and what they would have meant with similar
phenomenological research because we have found words and actions. This experience of reaching
that such studies usually express their findings in towards insiderness is ‘‘an attempt to make contact
waysthatoftenconnecttoexistentialhumanthemes tosomethingwithinthepatientthattheprofessional
thatfar transcendthespecificfocusofthepaperand carer can trust’’ (p. 518). In other words, it is a
are thus amenable to interrogation with a different searchforsomedegreeof‘‘closeness’’inthesenseof
focus in mind. Such ‘‘amenability’’ of phenomen- tryingtoimaginativelycontactthecommonhuman-
ological research to related existential interrogation ity between carer and cared for: ‘‘they seek some-
makes sense to us because of the epistemological thing within the patient to get in contact with’’ (p.
underpinning of phenomenological research that 520) and ‘‘they seek confirmation from the patient’’
acknowledges the ‘‘seamlessness’’ and ‘‘intercon- (p. 519). At the same time, there is always a certain
nectedness’’ of lifeworld phenomena. Further to distance for professional carers, in that they can
this, in our choice of papers, we were particularly never be sure that they have achieved a coherent
attractedtomarginalcaringsituationsatthelimitsof understanding of the confused other’s insiderness.
caring abilities. These extreme situations called our Thisexperiencethereforeopensupacertainkindof
attention to the outer boundaries of what needs vulnerability in the professional carer which is un-
to be included within the phenomenon: ‘‘caring for avoidable because, in this situation, they have little
insiderness,’’andassuch,posedinterestingchallenges ‘‘knowing’’ to rely on, especially when they ‘‘fail to
foranysituationinwhichanappreciationofanother get close to the patient.’’ The study reveals differ-
person’s‘‘insiderness’’isapproached.Regardingour entpossiblepathwaysinresponsetothisdilemmaof
styleofreflectingonthestudy,weengagedinsucha ‘‘not knowing.’’ The first possibility is that the pro-
wayastobecomepresenttoimplicitmeaningsbeing fessional, in being excessively focused on worrying
revealedwhichweputintolanguage.Wenowreport about the safety of the person, attempts to gain
on a number of insights that emerged through the controlintheencounterandinterveneontheothers
rangeofthechosenresearchstudies.Thestudiesare behalfinorder toguidethepatienttowardsaprede-
summarized in Table I. terminedpurpose.Thispredeterminedpurposehow-
ever cannot be said to be the patient’s purpose, but
rather the professional’s purpose. Such a pathway
Empirically informed insights into the
abandons a meaningful consideration of the insider-
phenomenon: ‘‘caring for insiderness’’
ness of the patient because of safety concerns. The
a) An extreme example of the receding depths of professional then gains a certain sense of personal
insiderness in a caring context: a meaning revealed security and a relief of their own anxiety, but this is
byprofessionalswhocannotseeaconfusedpatients’ at the cost of losing the confused person’s purpose
insiderness. andoflettinggooftheattempttoreachtowardsthe
Stenwall, Sandberg, Eriksdotter Jo¨nhagen, and other’s insiderness in such difficult circumstances.
Fagerberg(2007)exploredtheprofessionals’experi- Another nuance in response to not being able
ence of encountering older confused patients. Their to easily find the patient’s ‘‘insiderness’’ is what
study points to a particular nuance of insiderness, Stenwall et al. (2007) call ‘‘always being on guard.’’
whichconcernsthedilemmathataprofessionalmay In‘‘alwaysbeing onguard’’,thecarers‘‘feel respon-
experience when encountering a confused person. sible for the well-being of the patient and have to
Here, the professional is challenged by having to guardthepatientagainstthemselves’’(p.518).How-
open themselves to an experience of unfamiliarity. ever, this feeling of responsibility is an ambiguous
The challenge that this poses is how to reach and experience for the professional in that it is not
understand the confused patient’s ‘‘insiderness’’ without conflict. Such professionals report feeling
when this ‘‘insiderness’’ is so opaque or immedia- guilt andfearabouttakingso muchresponsibilityin
tely unfamiliar to the professional. The confused such an interventionist way, especially when the
person’s actions are unforeseeable and their words patient is no longer in a confused state. They worry
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Citation:IntJQualitativeStudHealthWell-being2014;9:21421-http://dx.doi.org/10.3402/qhw.v9.21421
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TableI. Summaryofphenomenologicalstudies.
C
itatio Mode of access tothe
n Focusof study and research phenomenonandfromthe Methodological Range of phenomena relevantto
:
In Authorand date question perspective of: approach Sample ‘‘Insiderness’’
t
J
Q
u Stenwall E, Encountering the older Professional carerswere Descriptive Ten professional carers + Concentrates on insiderness that
a
lita Sandberg S, confused patient: professional interviewedusinga phenomenology from wardsspecializing in isopaque,unforeseeable and
tive Eriksdotter carers’ experiences. Theaim phenomenological caring forconfused older unpredictable
Stu JonhagenM,& wastogain anunderstanding approach patients in + Understanding another’s
d FagerbergI ofthe meaningof professional Sweden insidernessbyexchanging self
H
e (2007) carers experiences of their withother
a
lth encounters witholder
W
confused patients
e
ll-be Lundqvist A, Mothers’ experiences of Mothers wereinterviewed Hermeneutic Sixteen mothers whohad + Showingunderstandingofothers
in
g Nilstun T, & professional carewhentheir 2years after thedeath of phenomenology losttheir babywithin insidernessreduces
2
0 DykesAK newborndies their newborns 2weeks ofbirth Sample isolation andincreases patients
1
4; (2002) drawnfrom three Swedish power
9
: hospitals + Conversely,iatrogenic suffering
2
14 thatcomes from a lackof
2
1 showing this
-
h + Theimportance of a non-
ttp judgementalreaching out
://d withouthaving tobe asked P
x.doi.o Stenwall E, Theolder persons experience Olderpeoplewhosuffered Phenomenological Sevenolderpatientsallover + Thedistance andloneliness of heno
rg Jonhagen ME, ofencounteringprofessional acute confusion were oriented latent 65fromtwogeriatricwards ‘beingfar away’ from one’s m
/10 Sandberg,J carers and close relatives interviewedfollowingan qualitative analysis of inanemergency hospital in insidernessbeingunderstood en
.3402/q &(20F0a8g)erbergI dstuartieng anacute confusional imnieteiatilnigntroductory interview data ametropolitan area + Raegaecnheirnaglmouotveto*itnhseidfeerenliensgs as ologic
hw.v ‘‘of being takenseriously’’ ally
9.21421 CaDLrulasthszolebnnerGKg,,,K, Vpsiyoclehniatterinccocaurnetersin Teexnopcdoereuienepnteecnressuonfdveirostleanntdings Raenpeapflcreotcmatcievhnetuliisfnientwegrov‘r‘ilredew-ing’’ 1aSn2wdesdtcaeofnfm:fmroonumeninptyusyrcscaehrieaantirndicsix ++ IaEnuxstpihdeeerniretnincecsicsnagarsethaefoaubnadnadtoionnmfeonrt inform
&Nystrom M aboutaneventchosenby careassistants from ofinsidernesswhencomingfrom ed
(2004) participants andwritten psychiatric careand one a‘‘blank face’’ in
narrativesabout a nurse and four assistants + Acceptance of the another’s sig
(pagenum pepnoacrstiotiucivinpetaeonrrtfarovmioleeancth from community care vdinuimslindeeenrrasniboeinslistoyfiscaarninigmfpoorrtant htstha
bernotforcitation Ny(2st0r0o6m)M Aolofpnsheyalmisnibeas*oslsloasnsdofexthisetewnotiralld Tagpniahvtdieinepgner.xtospIfnewertsiiesterihnovcniseepawleosecfcawahrpiethhasia RHineteefrlrmevcieteinwveeudltiaifcteawanoarlldysis of F45o(cid:2)u7r2wyoemaresnoaldnd five men ++ IcHbnaeosniiw’dnteicprnonlsameiydsesewroiinstuehwtsssaoidrapetlhawraltiiytctsilpenaeitfeioditnstion tcanguide
purpose)3 difficulties outsiderness orotherness practic
e
L. Todres et al.
Rangeofphenomenarelevantto‘‘Insiderness’’ Anappreciationofinsidernesshelpstowiselyshiftcarefromanimpersonalanonymousleveltoanexistentialpersonallevel AfocusonwhathappenswhenexternalprotocolsareprivilegedovercaringforinsidernessThedilemmaofhowtocometotermswithasituationwhenanoutsideperspectiveofthemselvesneedstobeprivileged iprnapoitinnnhectaeesphehTrvtsityioseudieheheorrrcehniv’entsshrateifann’evdusvvslexgeiilusitetilntnyulsr‘awon‘e’sai’.netmisftcdhereiaSsooaeeineinosndbrnlsdn,ntelessieasrtetntiuuhntosthuussdrseefaia.erstytieliousnls’tyinoaso’sshutr-ifmedigteoayhteosahlnarefwihneonntcaaaorgueepvgyfsrxteressuehaonf‘nmefo‘aoreatcfiethpspblecesterlrokhedieotounndaefnottoeoieonfoasstwsstltcmkyuiihacon.nfceararngocerorAra.gweemfillsirToslinssncrftahtaguchahtluriahlenoetalsnyyyer-tf,
have got is themselves trying to reach some sense of
+ + +
the insiderness of the other, and this trying to reach
d ‘‘that’’requiresthemtofeelaminimalbutnecessary
e 7years.whohawithinbowel ddeognr’etefeoefl afeemliinngimsaalfedeagnrdeeseocfusraef,etbyecaanudseseicfutrhiteyy,
ampl 537(cid:2)weesrgedwing tchoenntrtohl.ealternativepathisanexcessiveneedtotake
S Sixwomen 16patientsAllinterviebeendischa5daysfollosurgery gfinouslTiditdysheirosinnffeiarsmssstteotonhrebseemedoueefnatadinnienlsroisdttuhoeniorscndeepsfsrostoh.smieTtidvhthieeleenmnpeeomxeitndattahofnoefdmrvaieeomwnubeno’is--f
the‘‘caredforperson’’inallitspossibilitiesandrange.
al
c b) An example of how one’s insiderness appears
gih
olooac ogy ogy to seek or demand recognition and affirmation in
ethodappr ptivemenol ptivemenol ceaxrpienrgiensicteuaotfioonlsd:ermpeeaonpinlegsbereinvgeacleodnfuthseroduagshwthelel
M rio rio as through mothers experiences of their babies lives
cn cn
Desphe Desphe being threatened.
Inafurtherstudy,Stenwall,EriksdotterJo¨nhagen,
Modeofaccesstothephenomenonandfromtheperspectiveof: Themeaningofcaringsupport.Interviewswithwomenlivingwithheartfailure Theexperienceofrecoveryfollowingearlydischarge.Interviewswithpatientsintheirownhomes2weeksafterearlydischarge.Patientsaskedtodescribewhatitwasliketolivethroughtherecoveryperiod Sppgspf‘n‘etoferoeaueaorsinildnrnssfdeoygtaubssnwhsnuet’oihisdrcaogfghryeneho,’rxa’lvusoaipligtfsgnleoerdhhwodroteaimsdernFonwwdrapctahghheeinenacoeedrotlnpobcfailsteaeanwetrpirrsgehcaayralacc(iiennutik2utlgena0yittfeta0feitwrbvt8eocooell)aoemsssnlehimlxkftwaoiuopeknawhselkeoi‘ode‘ldetrealohendndestcetshtiorhoraoteuehptu.mieynenet.sWrtssoieseiwTddorlhldeivehnenereerri’n’gesssr-’
Focusofstudyandresearchquestion Themeaningofcaringsupportfromperspectiveofwomeninmiddleagelivingwithheartfailure Thelivedexperienceoffasttracksurgery.Patients’experiencesofearlydischargefollowingbowelsurgery aiusosctrvmheutoninnuoaecmdpdudchtreohsyehcirlsessoessdpoidetntternoucooocrtoetatovoihddftpoimweideeoneareawoin.lntsrpasiTtddst,enloaheshxtcft’il’iaehnmaaysmeniragnaeenapncekxoolndaetpenthcneesees‘usrfr‘guoeauftiiewanlefpsnntlesfphaydieedcvyooeeetarwloohdiptlnfleceoiptdsgdiyhnrtrecc.heeoeruolceFlefsciwpinsoarbesenooteneirdimtsfivfswunsuoe.ibagasnntteeTyohi‘ido‘fdtenhorhnieegp‘uere‘p.aybetces.rmeTp’hin’fsidreonehidIeesenndges--,l
TableI.(Continued) Authoranddate Nordgrenetal.(2008) Norlyk&Harder(2009) tbciptooeewiAniasnrfagisnrrfduotmotstra’its’nfkhueegmeelnrlktayhkeosuaexertnsareidtmoovheelupedrnsislereltdyroi;enoopmsfdteihodahiipnnesorldwendisreefeeostcaasenoilelmgg.t’nshraeiattiattnietostrnhiscdeoieesinrvrpnseworneolosavwsrtilidhdoaeepnidns-,
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Citation:IntJQualitativeStudHealthWell-being2014;9:21421-http://dx.doi.org/10.3402/qhw.v9.21421
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Phenomenologically informed insights that can guide practice
by Lundqvist, Nilstun, and Dykes (2002). They of power that can easily be missed. If a professional
examine and illuminate mothers’ experiences and is not aware of the depth of the power they carry in
perceptions of the care provided by neonatal staff such marginal situations, such power can be highly
(nurses,midwivesandphysicians),whereababyhad destructive.
died or where a baby’s survival was threatened. The
explicit focus by the authors of this study concerns c)Anexampleofinsidernesscallingfor understand-
how mothers felt both empowered and powerless at ing of unique existential concerns and meanings: a
different times. Their findings draw attention to the meaning revealedthroughwomen’sexpressed needs
thingsneonatalstaffdowhichmakemothersfeelem- of living with heart failure.
poweredandconversely,thethingsthatmakemothers Nordgren, Asp, and Fagerberg (2008) aimed to
feel disempowered, discouraged and even violated. understandthemeaningofsupportforwomenliving
In relation to illuminating the phenomenon of with heart failure. The findings share some of the
insiderness, this study graphically illustrates how a essentialmeaningsofthepreviousstudy,thatis,that
professionals’ appreciation of a mother’s insiderness formal care can become excessively caught up in
can be very important in helping the mother feel routines, and that this can result in patients feeling
understood, thus significantly reducing mothers’ angry, sorrowful or despairing about the failure of
sense of isolation and disconnection. Conversely a the care regime meeting them as unique individuals
lackofappreciationofmothers’insidernesscanpro- with their own variable concerns and needs. In
foundlydisempowerthem,leadingtogreatiatrogenic relation to the phenomenon of caring for insider-
suffering.Thevalueofthisstudyforilluminatingthe ness, this study highlights how in an on-going life-
phenomenon of insiderness is in how it shows the threatening condition, an adequate understanding
pivotal role that power plays in facilitating or ob- of insiderness would focus on the experience of
structingthepathwaytowardsacareforinsiderness. existential uncertainty rather than just the details, for
Whenthemothersexperiencedasenseofrecogni- example, symptoms, of the person’s illness. This
tion of their struggle from staff, mothers felt much study portrays how women living with heart failure
closer to them and this closeness comforted the inmiddleageemphasizedawishtoberespondedto
mothers. This experience made the mothers feel atamoreexistentiallevelregardingthechallengesof
moreabletomakedecisionsabouttheirbaby,which theirillnessandhowthisfittedintowhatitmeantfor
in turn enhanced and supported mothers’ confi- their major or minor life projects (‘‘being able to’’).
dence and a sense of being more in control of the Atbest,theywere frustratedthat supportandinfor-
situation. Again, as in previous examples, caring for mation was only directed to them in very general
insiderness does not depend on a detailed under- ways. They felt abandoned because the illness af-
standing of the persons’ situation or world but fectedtheirwholelife,buttheprofessionalfocuswas
ratheronanon-judgemental,general‘‘reachingout’’ onlyonpartoftheirlife.Thewomenwantedamore
to them, without having to be asked. Here, the existential concern to be addressed, in which un-
mothers’ experience of a sense of benign closeness certaintywasattheheartofthematter.Theywanted
supportedconfidence.Withinthismarginalcontext, to discuss things like how to find balance in their
caringforinsidernessiscaringforwhatthemotheris lives,in acontextwhere their heartfailurelimits life
going through. This study also illuminates an inter- projects. They wanted a discussion about daily life.
estingvariationbywhichmothersrespondedtotheir This study tells us about how an appreciation of
insiderness notbeing understood or recognizedbya insidernessopensupthecoreissuestoberesponded
kind of rebellious ‘‘taking of things into their own to (in this case, living a life of uncertainty) rather
hands.’’Thisisakindofstrengththatthesemothers than mere external ‘‘facts,’’ and why existential
achieved through facing not only the experience of issues need to be a crucial reference point if we
their suffering, but by doing this in the context of want care to truly meet a human being.
feeling unrecognized or ignored. In such moments
mothers (or patients in general) may ‘‘go with what d) An example of insiderness as a unique insistence
they want’’ and find other allies for example, apart- of the body: a meaning revealed by professionals
ner or husband who is able to support them. The over-focus on external and standardized protocols.
extreme marginal situation that this study focuses NorlykandHarder(2009)describethelivedexpe-
on, reveals the creative potential that can occur rience of early discharge from hospital after colon
when one’s insiderness is not recognized or under- surgery. Patients had participated in a fast track
stood, strengthening the persons’ autonomy, as well programmewherethey were discharged from hospi-
as the devastating potential of one’s insiderness not tal between 2 and 5 days after surgery. The authors
beingrecognized,leadingtoexperiencesofviolation. were specifically interested in illuminating what it
So,suchrecognition or non-recognition hasa depth was like to live through the recovery period in the
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early days. In relation to the phenomenon of caring professionals if they as patients were not involved in
for insiderness, this study is revealing in that it a minimum of vital decisions; it is a balance.
highlights a marginal situation in which external
e)Anexampleofinsidernessasaninsistencetoparti-
protocols are privileged over caring for insiderness
cipate in the world: a meaning revealed by aphasic
because of the perceived justification that it is what
patients not being able to express themselves in
the marginal situation requires.
everyday language.
In this example, as in other marginal situations,
Nystrom (2006) aimed to analyse the existential
such as intensive care, where the person ‘‘hands
consequences of aphasia and what it was like for
over’’ their entire bodily care to another, the body’s
patients to struggle to regain the ability to com-
recovery is seen as a homogeneous process. That is,
municate. This paper has many important and
institutionalexpectationsarebasedonanenactment
interesting themes, but we focus here on those
ofrecoveryprotocolsthatwouldworkbetterifevery-
dimensions of the paper that add insights that are
one was the same. Within such a regime ‘‘care’’
relevant to the meaning of caring for insiderness.
contains an emphasis on rules that patients need to
People experiencing aphasia become really worried
follow (must do’s). This tacit preference for every-
about being considered stupid by others. The study
one ‘‘being the same’’ highlights the absence of
graphically illustrates how, for these people, being
a particular meaning of ‘‘insiderness,’’ that is, the
aphasicisnotonlyahumiliatingexperiencebutalso
uniquenessanddifferenceofeachperson’sbodyand
condemns them to a deep existential loneliness and
world. The study documents how patients lived a
even a sense of imprisonment. Although this group
certaintensionbetweentherulesthatarepartofthe
ofpeopleshareasenseof abandonmentwithpeople
postoperative care system and their own ‘‘insider
from the particular studies discussed previously that
experience’’ofwhattheyfelttheyneededtorecover.
focus on the experience of confused older people,
Post-operative discomfort created a dilemma for
there is an important distinction. It is clear from
patients: of following the professional’s advice re-
Nystrom’s study that the people living with aphasia
garding regimen objectives or responding to their
have great clarity about their insider world, which
own intuition of what could contribute to their
they would like to share and which they cannot.
comfort in a unique way. For example, unpleasant
There is a ‘‘shock’’ to this kind and level of exis-
symptoms made patients feel weak, yet hospital
tentialloneliness, likebeingaghostwhoistherebut
norms and expectations often required them to be
whocannotparticipate.Inrelationtothemeaningof
strongerthantheycouldbewhentheywererecovering.
caring for insiderness, this study highlights how
Inthebackground,thereisastrongdesiretotryand
one’s sense of one’s own insiderness can be very
comply with professional expectations, that they
coherentbutisworthlittleif‘‘it’’can’tcomeoutside.
be strong and co-operative. Part of the dilemma is
The patients’ sense of existential loneliness consti-
there are times when an external expectation is an
tutesapainfulsensitivity that thehealthcare system
important part of the patient’s recovery, and here
has abandoned them. This sense of existential lone-
they are required to have some faith in the profes-
liness is also heightened by their perception that
sional’sexperience. Heretheymaybeaskedtoexert
other people misunderstand their aphasia as an
some effort in ways that may go against their own
incapacity to think. Such perceived judgements
inner sense of what is comfortable. The authors
from others add a sense of a ‘‘loss of dignity’’ to
express one of the meanings of this as follows: ‘‘It
their existential aloneness.
tookcouragefromthepatientstoignoretheirbody’s
The poignant dilemma experienced by this group
signs and have complete trust in the professional
can teach us something about how insiderness is
assurances that their bodywouldnotbe overworked
an important human essence, but can never move
by following the regime’’ (p. 176). But, on the con-
alone, and always seeks to be in play with a partici-
trary, this external demand was often overdone.
pation in ‘‘outsiderness’’ or otherness. Although
In relation to meaningful care, this study raises a
some of the previously discussed studies may em-
veryimportant questionaboutthe virtue of empow-
phasizetheimportanceofrespectingtheprivacyand
ering ‘‘insiderness.’’ It illustrates how in some
dignity of insiderness in some contexts this particu-
marginal situations where the insider perspective
lar study indicates another ‘‘energy’’ of insiderness
cannot be privileged, even then, the experience of
which is ‘‘to want to come out’’ and be understood
care would be improved by always including a pers-
and therefore participate in-the-world-with-others.
pectivewhichbalancestheexternalprotocolwithan
appreciationofuniqueinsiderness.Patientswantstaff f) An extreme example of how the insistence of in-
to acknowledge their discomfort, to see that they siderness can even lead to violence if a sense of felt
are trying hard and want staff to believe in them. In isolationisneglected:ameaningrevealedinthepsy-
this study, patients felt that they could not trust chiatriccaresettingwherepatientsbecomeviolent.
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Phenomenologically informed insights that can guide practice
Carlsson, Dahlberg, Ekebergh, and Dahlberg heartedness’’andthroughlifeworldknowledge
(2004) focused on situations in which patients as an interpretive touchstone.
became violent within a psychiatric care setting
and the implications for professional caring. The
‘‘Insiderness’’ recedes from the view of the
authors of the study emphasize the tension between
other
authentic personal care and detached care.
This study learnt from patients some important Oneofthecentralinsightsaboutthephenomenonof
things about the kind of encounter that would help caring for insiderness that has been revealed by the
analysis has to do with the challenge of the unfor-
them to avoid the desperation of violence. Patients
eseeable encounter. The contributions of Levinas
experiencing such care depended on professionals
(1969) provide an ontological context for the depth
showingthemselvesinhumanways,activelyengaged
of such an unforeseeable encounter. In his work, he
and affected and moved or touched by the suffering
unfolds what he refers to as ‘‘the infinity of other-
of the patient. Here the patient also experienced a
ness.’’ One of the implications of this is that there is
respectfulness of their insiderness which included a
an epistemological limit to what we can know about
recognition and acceptance of the patient’s vulner-
any other person, and indeed if we were to prema-
abilities and shortcomings. The appreciation of
turely lurch towards ‘‘such knowing’’ we will have
insidernesshaswithinitaconcernfor thewell-being
breached an ethical calling that keeps the ‘‘infinity’’
of the patient and this constitutes a caring power.
of the other alive. Levinas refers to ‘‘the face’’ as a
Conversely when the patients experienced a certain
metaphorical signification of the world of the other
detached instrumentality from professionals this
that can never be summarized or reduced to some-
would result in feelings of insecurity, fragility,
thing we assume to know: ‘‘The face resists my
vulnerability and abandonment. These feelings
possession, resists my powers’’ (Levinas, 1969, p.
would feed into an already existing fear and sense
197). And further: ‘‘I can recognize the gaze of the
of violation. A patient expressed what it was like to stranger, the widow, and the orphan only in giving
be met in a cold and distant way: ‘‘my lasting and refusing; I am free to give or to refuse ...’’
memory from these moments is the encounter with (Levinas, 1969, p. 77). The confused patient pre-
an expressionless blank face, with expressionless sents a particular example of the infinity of other-
cold eyes staring back at me’’ (p. 295). This is ‘‘the ness.Wehaveseenhowtheprofessionals,iftheyare
face’’ in which the insiderness of the other has been unable to work with this existential limit, can close
abandoned. In the presence of such an encounter, downbyeither rushingforwaystocontroltheother
patients reported feeling ‘‘reduced’’ to being a or alternatively towards a premature abandonment
patient and further to feeling degraded and un- of the other. Striving towards insiderness within the
worthy, helpless, disrespected, incapacitated and contextoftheinfinityofothernesscanonlyoccurby
unimportant. The authors provide examples of the use of oneself rather than the application of
how such extreme feelings of desperation can lead alreadymadeknowledge.Inotherwordsitisonlyby
to episodes of violent reaction. This study therefore using oneself that one can make reflective decisions
bears testimony to how abandonment of insiderness in the moment. For the professionals such a ‘‘use of
oneself’’ in the moment is full of vulnerability
can become a matter of felt psychological survival.
because they are so uncertain about the insiderness
of the patient. This ‘‘existential given’’ (that insider-
Implications for practice
ness always recedes from others so that it can never
In this section, we elaborate on the following three be fully grasped absolutely), poses a fundamental
question about the nature of what evidence could
insights that emerged from our consideration:
mean in lifeworld-led care.
a) The importance of the understanding that
‘‘insiderness’’ always recedes from the view ‘‘Reaching towards’’ otherness as more
of the other so that it can never be grasped important than ‘‘knowing’’
absolutely.
The status of ‘‘evidence’’ is humbled by the unique
b) How ‘‘reaching towards’’ the ‘‘insiderness’’
situations of practice. In our conventional profes-
of another as a process and practice is often
sional discourse on evidence-based practice, we
moreimportantthan‘‘knowing’’thedetailsof
believe that an unrealistic fantasy has been set up
someone’s ‘‘insiderness.’’ that privileges the discourse on evidence over a
c) That ‘‘caring for insiderness’’ calls for the discourse on understanding and judgement. The
complex use of self through ‘‘reflective open- process of ‘‘reaching towards’’ insiderness may be
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L. Todres et al.
more important than an accurate understanding of denceinaproductivewayorelsecantraumatizeina
what is in the insiderness (that is, the content of the destructiveway.Carerswhoareattunedinanopen-
knowledge that is found there). Thus, a reaching for hearted way manage the emotional tension within
insiderness is more of a productive direction in themselves between encouraging, or even challen-
practice rather than a fully achieved outcome. ging, independence and that of a nurturing ac-
Consistent with this insight, the findings of our ceptance which is non-demanding. The particular
review motivates us to suggest that the achievement emotional quality that underpins ‘‘reaching for
of understanding ‘‘insiderness’’ is always vulnerable insiderness’’ is one of patience and anticipation.
rather than something that can be achieved as a Meaningful caring for insiderness thus challenges
completed outcome: that ‘‘reaching towards’’ as a acarertostretchtowards‘‘thewisdomofinsecurity’’
process is more important that the achievement of (Watts, 2011). Reaching towards insiderness in-
‘‘knowing’’asanoutcome.Byitsverynature,caring volves the use of the self by carers in such a way as
for insiderness is always more intricate and more to ‘‘hang out’’ at the edge of their own levels of
specific than any generality, as it sits within the security. One needs to find this edge where one
uniqueness of the receding nature of insiderness neithercompletelygivesupone’sdesiresforsecurity,
(Gendlin, 1991; Polkinghorne, 2004). Although drawing on sources of knowing, but on the other
‘‘general understandings’’ may sensitize us for reach- handstretchestowardsanopen-mindedquestioning
ing towards insiderness, these general understand- in the freshness of the moment. This emotional
ings need to be bridled by the openness of practice
capacity(Galvin&Todres,2009)isparticularlyger-
and by the many nuances that all encounters with
mane to attending to the task of the receding nature
patientscontributes.Suchopennessofpracticeisby
ofinsidernessandforthecareofthisrecedingnature.
essence ‘‘always on the way’’ and is best defined by
the ‘‘energy’’ of ‘‘reaching towards’’ rather than an b) Lifeworld knowledge as an interpretive touch-
attitude which forecloses the complexity of its task. stone
Theanalysisinthispapersuggeststhattherearea
number of specific understandings that are impor-
The alternative: caring for insidernessthrough
tant when caring for the insiderness of another.
the complex use of self
If this study has revealed insights which expose the . Ifacarerorprofessionalisunabletospecifically
vulnerability of sense-making in the unique encoun- understandthedetailsofanother’sworldthenit
ter, then the question arises: how can professionals is important to try to imaginatively understand
authentically care for insiderness given the existen- somethingmore general asafocus, namely,the
tiallimitswehavebeenarticulating.Weproposetwo common humanity between them. This re-
ways: a) reflective openheartedness and b) lifeworld quires a shift in cognitive focus from the
knowledge as an interpretive touchstone. ‘‘other’’ in him or herself to an understanding
ofwhatisbetweenthematthismoment.Sofor
a) Reflective openheartedness example, instead of imagining what the other
The analysis in this paper suggests a certain person is thinking, to rather shift focus to an
emotional and embodied capacity that is important awareness of something that the carer and the
whencaringfortheinsidernessofanother.Thereare other person may be sharing at that moment,
occasions where carers need to feel a minimal but and to articulate that.
necessarydegreeofsafetyandsecurityaboutwhatis . Patients’ need for recognition and the strong
going on in relation to the patient or another cared- striving towards seeking recognition suggests
for person. This raises the question of how carers thatwecan underestimatehowmuchthecared
are able to emotionally tolerate a degree of ‘‘not for person is looking for someone to trust in a
knowing’’ in order to sensitively reach towards in- general sense and that this often does not
siderness in openhearted ways without too much require the carer to knowall the details.Carers
preconception. need to understand that when they say ‘‘I
How can this ‘‘openness to not knowing,’’ how- understand’’ this does not have to mean that
ever,notbeenactedasaformofabandonment?The they specifically understand the content of
stories of the mothers where their insiderness was the person’s ‘‘insiderness,’’ but it rather has the
not understood or recognized resulted either in a form: ‘‘I understand your vulnerability at the
rebellious‘‘takingofthingsintotheirownhands’’or moment.’’ Here carers understand the great
a sense of traumatized violation from which they power that they hold in being the one who
founditdifficult torecover(Lundqvistetal.,2002). engenderstrustrather thanbeingtheone‘‘who
So, betrayal of insiderness can either force indepen- knows.’’ In a lifeworld-led approach this is a
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Phenomenologically informed insights that can guide practice
shift of understanding away from a personal Inthisview‘‘illness’’isnotseparatefromhowa
expectationofcertaintytowards‘‘thereaching’’ person’s insiderness is understood or ignored.
towards the ‘‘ambiguous’’ human situation. Intwooftheanalysedstudieswesawhowdeep
. Ouranalysis further suggestsaconsiderationof or central the ‘‘welcoming’’ of insiderness was,
the existential meaning of what the cared for is or howdeep and central the ‘‘abandoning’’was
goingthroughingeneral.Suchunderstandingis (Carlsson et al., 2004; Nystrom, 2006). The
shown by a response which acts on the implica- course of the illness in both contexts is not
tions of what the person is going through. In independent from how it is responded to by
other words, it involves a focus on what the others. This kind of lifeworld understanding
personisabletodoorcan’tdointheireveryday thus requires a participative world view in
lives and to help the person to do something which brute facts such as illness are always
that anticipates their needs. Boss (1963) calls seen within relational contexts that can change
this ‘‘anticipatory care’’ as opposed to ‘‘inter- them. This understanding thus emphasizes the
vening care.’’ In other words, even though great power of ‘‘reaching for insiderness’’ as a
carers may not be able to understand the force for healing, and how its absence can
persons inside world in detail, they are able to become a form of iatrogenic suffering.
become imaginatively sensitive to what the
person is trying to ‘‘reach for.’’ Inconclusion,itcouldbesaidthatthe‘‘insiderness’’
. Another kind of general understanding that dimension of our humanity is the ‘‘soft underbelly’’
maybenefitcarerswhentheycan’thavespecific that often lies hidden in the shadows. It is both the
understandings of a person’s insiderness refers place that hides our vulnerabilities and therefore
toanunderstandingofthekindofbodilystruggle often the place that is neglected in our discourses.
that a person is going through in their illness The alternative to such neglect would be a much
trajectory. This focus can be particularly em- keenerattunementtothephenomenonof‘‘caringfor
powered by sensitive observation of these bodily insiderness’’ as a foundational requirement for care
struggles and what this might mean for the tobecare.Itishopedthatbyrestoring‘‘insiderness’’
unique ways that a person’s body is signifying explicitlytoitsessentialstatusformeaningfulcaring,
about their situation. This is a shift of focus something has been contributed about what it is,
what ‘‘reaching’’ for it means, and what the con-
fromthemerebodilybehaviourorsymptomsto
sequences may be if it is sufficiently neglected.
anunderstandingofwhatlivedbodyistryingto
say about the person’s insiderness. An over-
reliance on the body(cid:2)object gaze may shift Conflict of interest and funding
attention away from insiderness. For example,
Theauthorshavenotreceivedanyfundingorbenefits
when the person is expressing discomfort, the
fromindustryorelsewheretoconductthisstudy.
carerfocusesontheinsiderness-generatedmes-
sage about what this is uniquely saying in that
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