A trajectory towards partnership in care - Patient experiences of autonomy in intensive care : A qualitative study

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This is the published version of a paper published in Intensive & Critical Care Nursing.

Citation for the original published paper (version of record):

Lindberg, C., Sivberg, B., Willman, A., Fagerström, C. (2015)

A trajectory towards partnership in care - Patient experiences of autonomy in intensive

care: A qualitative study

Intensive & Critical Care Nursing, 31(5): 294-302

https://doi.org/10.1016/j.iccn.2015.04.003

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N.B. When citing this work, cite the original published paper.

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Availableonlineatwww.sciencedirect.com

ScienceDirect

jo u rn al h o m e p a g e :w w w . e l s e v i e r . c o m / i c c n

ORIGINAL

ARTICLE

A

trajectory

towards

partnership

in

care

—

Patient

experiences

of

autonomy

in

intensive

care:

A

qualitative

study

Catharina

Lindberg

a,b,∗

,

Bengt

Sivberg

b

,

Ania

Willman

a,c

,

Cecilia

Fagerström

a,d

a_Department_of_Health,_Blekinge_Institute_of_Technology,_SE-371₇₉_Karlskrona,_Sweden b_Department_of_Health_Sciences,_Lund_University,_SE-221₀₀_Lund,_Sweden

c_Department_of_Care_Science,_Malmö_University,_SE-205₀₆_Malmö,_Sweden d_Blekinge_Centre_of_Competence,_SE-371₈₁_Karlskrona,_Sweden

Accepted8April2015 KEYWORDS Caring; Contentanalysis; Intensivecare; Interviews; PatientAutonomy; Qualitativeresearch Summary

Objective:Theaimofthisstudywastodescribeandelucidatepatientexperiencesofautonomy inanintensivecarecontextfromacaringperspective.

Background: Patientsinintensivecareunits(ICUs) arecritically illandinadependentand vulnerableposition.Thereisthusariskofstafftakingcommandnotonlyofthepatients’vital functionsbutalsooftheirdecision-making.

Methods:Aqualitativedesignwasselected.Individualinterviewswereconductedwith11adult patientswithanintensivecareepisodeoftwodaysormoreatsixSwedishICUs.Thedatawere analysedusingInductiveContentAnalysis.

Findings:Patientautonomyinintensivecarewasshowntobe‘Atrajectorytowardspartnership incaredependingonstateofhealthandmutualunderstanding’.Itwasexperiencedthrough acknowledgeddependence,beingrecognisedasaperson,invitedparticipationandbecoming aco-partnerincare.

Conclusion:Patientsinneedofintensivecarewantedtobeinvolvedinmakingdecisionsabout theircareasthiscreatesatrustingandhealthycareenvironment.Greaterawarenessisrequired abouttheICUpatientnotonlybeingapassivecarerecipientbutalsoanactiveagentandwhere involvementindecision-makingandparticipationincarearecrucial.

∗_{Corresponding}_author_at:_Department_of_Health,_Blekinge_Institute_of_Technology,_SE-371₇₉_Karlskrona,_Sweden._Tel.:₊₄₆₄₅₅₃₈₅₄_29. E-mailaddress:catharina.lindberg@bth.se(C.Lindberg).

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Patientexperiencesofautonomyinintensivecare 295

ImplicationsforClinicalPractice

• PatientsintheICUcouldbehighlydependent andat thesametimeindependentanditis thereforeimportantto handleeachnursingcareactivityinanadjustedwaytoensurethepatientfeelsincluded.

• Staffcontinuityisessentialtoensureatacitunderstandingthatcreatesagoodcarerelationshipasthecommunicative skillsofpatientsintheICUareoftenimpairedandtheyrelyonacontinuousstreamofinformationinordertofeel theyareinvolvedintheirowncare.

• Patientsinneedofintensivecarewanttobecoachedandpushedintoactivitiesinrelationtotheirstateofhealth asthisreinforcestheirconﬁdenceintheirownability.

• CreatinganICUenvironmentwherethestaffattitudeissupportiveandinclusiveisofgreatimportancetothepatients’ potentialtoinﬂuencetheircareandrecoveryastheywanttoplayanactiverolerelativetotheircapacity.

Introduction

Patients in intensive care units (ICUs) are critically ill, are often receiving life-sustaining treatment and in most cases theiradmission is unexpected, unplannedand trau-matic.Theybecomehighlydependentonstaffandtechnical equipmentastheirabilitytoperformself-careis reduced (LykkegaardandDelmar,2013),thusputtingthematriskof havingtheir autonomy challenged. Increasedvulnerability hasbeenidentiﬁedastheantecedentofpatientautonomy in acaringcontext (Lindbergetal., 2014),i.e. a preced-ingphenomenon thatthrougha changedinterdependence and/oraneedofcaresupportchallengesthepotentialfora persontomanageautonomy.ICUstaffmustbesensitiveto thisvulnerability.Theymustbealertanddevelopa ‘clini-caleye’,watchingoverthewholeofthepatient’sbodyand not just focusingonparameters and technicalequipment (Gjengedaletal.,2013).Theforceddependenceon equip-menthasbeenshowntomakethepatientfeelpassiveand shut in, preventingthem fromperformingsimple actions, suchasgettingout ofbedor goingtothetoilet(Almerud et al., 2007). This often creates a distance between the patient and the careras a result of technicalmonitoring wherethefocusisonthebiologicalbody.Thereistherefore ariskthatICUstaffnotonlytakecommandofthepatient’s vitalfunctions but alsotheir decision-making,leaving the patientswithoutcontroloftheirownbodyandmind.

The democratisationprocessinmany westernsocieties hasincludedachangeindiscourserelatedtothepower bal-ancebetweenstaffandpatient,withashiftinfavourofthe patient(Hewitt-Taylor,2004).Thisisnotalwaysregardedas positiveforthepatientasdecision-makingcanbestressful andconfusing andcould createa senseof unease(Pierce andHicks,2001).Thereisariskthathealthcare profession-alsdevelop irrelevantconceptionsofa patient’sabilityto beactiveandself-managingiftheyregardautonomytobe anoverarchinggoalofhealthcare(Delmaretal.,2011).This mayleavetoomuchinthehandsofthepatientsandhavea possibledisadvantageouseffectontheirdignity.

Duetomedication,orfordisease-ortreatment-related reasons, patients do not always have the metacognitive capacitytomakedecisionsabouttheirowncare(Levinsson, 2008). This dependence requires the care staff to be ‘‘standing by’’, attentive to the patient at all times and tohavethe courage,willpower andknowledgetosupport thepatientsintheirattemptstoachieveindependenceand asenseofcontrol(Karlssonetal.,2012).Consequently,the

caringandtechnologicalaspectsofICUcareshouldnotbe seenasseparateentities,orviewedinrelationtoaspeciﬁc healthprofession,butaspartsof‘thecraftingprocess’, bal-ancingthemanyskillsthat areintrinsictopatientcarein ahigh-techenvironmentandworkinginthepatients’best interests(Price,2013,p.284).

Thereisalackofresearchinthefieldofpatient auton-omy related to ICU care that involves the patient’s own experiences.Patientsinneedofintensivecarearecritically ill,themortalityrateis highandtheir recollectionofthe timespentinthe ICU isoften affected(Bergbom-Engberg etal., 1988; Capuzzo et al., 2001), all of which impede involvementinresearchortheabilitytoreflectoncare pro-vision(LykkegaardandDelmar,2013).Otherconcepts,such asempowerment, have been investigated andthe results revealthat ‘nursingmaternalism’ couldbean obstacleto restoring patient control (Christensen and Hewitt-Taylor, 2007,p. 160)and that‘strengtheningandstimulating the patient’s inherent joy of life and will to fight’ could be aprerequisitefor restoringpatientcontrol(Wåhlinetal., 2006,p.375).Nevertheless,ithasbeenshownthatitisnot self-evidentforintensivecareRNstoregardthepatientas anactivesubject,sincepatientself-determinationisnota specificgoalfornursingcareinthishigh-techenvironment (MeijersandGustafsson,2008)eventhoughWestern health-care is oriented more and more towards person-centred care(Ekmanetal.,2011;McCormackandMcCance,2010). Ifpatientautonomy istobeconsidered an issuein future intensivecare,wherethepatientisthoughtofasanactive agent,thereisaneedtoaddressthepatient’sperspective.

Aim

Theaimofthisstudywastodescribeandelucidatepatient experiencesofautonomyinanintensivecarecontextfrom acaringperspective.

Ethical

considerations

This study wasconducted in line with the ethical princi-ples for research outlined in the Declaration of Helsinki (World Medical Association, 2013), and was approved by theRegionalEthical ReviewBoardinLund(No.2012:343), Sweden. The patients were given oral and written infor-mation about the study and their right to discontinue

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participationatanytime.Priortotheinterviews,informed consent to participate in the study was signed and the patientswereofferedtheopportunitytocontactthe mem-bersoftheresearchgroupifnecessary.

Methods

Aqualitativedesignwaschosenandthepointofdeparture wasthe phenomenologicaltraditionwitha holistic under-standingofhumanexperiences (Patton,2002).Qualitative methods facilitate the in-depth study of issues and with openness to data, often involving the researcher as the instrument.The sample is generallysmaller, allowing the researchertounderstandtheworldasviewedbythe respon-dents(ibid.).Individualinterviewswereconductedinorder torevealtheverypersonallevelofpatientexperiencesand feelingswhenbeingcaredforinanintensivecareunit.

Data

collection

Settings

The study wascarried out betweenMarch 2013 and April 2014at fivecountyhospitalsin south-eastSweden(A—E). OnethoracicandfivegeneralICUswereincluded.Eachward could accommodate five or six patients, had a nurse-to-patient ratioof 1:1—2 and was staffed by RNs (intensive carespecialisationismandatoryforRNsinSwedishICUs)and auxiliarynurses.TheexceptionwasthethoracicICU,which wasstaffedexclusivelybyRNs.Theroomswereeither sin-gleroomswithisolationfacilitiesormulti-bedrooms(twoto fourpatients)withfoldingscreenstohelppreservepatient integrity.Thepatientswerenotphysicallyrestrained,were neverleftaloneandvisitorswereallowedatanytime,day ornight.

Datacollectionprocess

Thestudywasperformedwithassistancefromintensivecare RNs,themajorityofwhomwerelinkedtotheintensivecare after-careservice. TheRNsidentiﬁedtheinformants, pro-videdverbalinformationaboutthestudyandhandedoveran informationletteronbehalfoftheresearchertoavoidthe patientfeelingobligedtoparticipate.Forthepurposesof short-termmemorytransition,theinterviewstookplaceon thegeneralhospitalwardstowhichtheinformantshadbeen transferredfollowingdischargefromtheICU.Theinterviews tookplacewithin thefollowing post-ICUtime ranges —1 week(n=7),2weeks(n=1),3weeks(n=1),4weeks(n=1) and7weeks(n=1)—andinrelationtotheprocessof identi-fyinginformantsandtheirhealthcondition.Theinterviews followed a guide based on the following twomain open-endedquestions:

‘‘Couldyoutellmeaboutyourstayattheintensivecare unit?’’

‘‘Couldyoutellmeabouttheopportunitytoparticipate inandinﬂuencedecisionsaboutyourcare?’’

Additional questions and probe questions were asked whenappropriate.Thelengthoftheinterviewsvariedfrom

12to97minutes(median54)andtheywererecordedand transcribedverbatim,includingremarksonpauses,laughter andsoon.

Participants

Thirteenpatientswhomettheinclusioncriteriawereasked toparticipateinthestudy.Theywerealladults(18yearsor over)andtheyhadanICUcareepisodeoftwodaysormore, including a need for variousforms of medicaltechnology (indicatingtheirdependenceandtheseverityoftheirhealth condition,seeTable1).TheycouldalsorecalltheICUcare episodeandtheywereorientedintermsoftimeandspace. Seven men andfour women (n=11) wereincluded (drop-outs n=2,[death priortointerviewn=1;latewithdrawal

n=1]).Theywereaged34—75years(median54.5),hadan ICU care episode of2—28 days(n=7),29—56 days(n=2), 57—84 days (n=1), 85—112 days (n=1), (median 10) and a varietyof admissiondiagnoses,mainly relatedtomajor surgery,severe infectionsand/or respiratoryfailure.None oftheparticipantssufferedfromachronic conditionprior totheICUcareepisodeandtheyhadallbeenadmittedto anICUfortheﬁrsttime.

Data

analysis

Theanalysiswascarriedoutinaccordancewiththe induc-tive approach of thecontent analysis model produced by

EloandKyngäs(2008),thus correspondingtoconventional contentanalysis(HsiehandShannon,2005),whichisoften usedwhenexistingtheoryorresearchliteratureislimited, aswasthecaseinthisstudy.Eachstepinthemodelinvolving overview reading, open coding, grouping,the use of cod-ingsheets, categorisingand abstractingtherevealed data (Fig.1)wasperformed inrelationtotheaimofthestudy. The first two steps were performed by the first author. The firstandsecondauthorsthen workedtogetheronthe remainingpartsof theanalysis.Finally,toavoid bias,the lastauthorvalidatedtheanalysisbyreading allthe inter-viewsandcheckingthecategorisationandinterpretationof thetexts.

Findings

Patient experiences of autonomy in intensive care were shownas‘‘Atrajectorytowardspartnershipincare

depend-ing on state of health and mutual understanding’’. The

ﬁndingsshowedthatthispartnershipbeginswith acknowl-edgement of the patient’s dependence, and ends with the patient becoming a co-partner in care. The partner-ship wasexperienced asvarying between different states of dependence and independence and wasguided by the patient’sreturntohealth.Thisreturncouldchangerapidly, andquite oftenunexpectedly,thus causing asetbackor a stepforwardintherecovery process.The differentstates of autonomy could also overlap and in a way that the patient could be in more than one of the states at the same time and that the recovery process could lead to increased capacity related tocertain nursing care proce-duresbutnottoothers.Inthepresentationoftheﬁndings,

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Patientexperiencesofautonomyinintensivecare 297

Table1 Technicalequipmentused(A—H)foreachoftheinformants(1—11).*

PatientNo. VentilatorA _NIVB _Iv_infusion

pumpsC

MonitoringD _Enteral_feeding

pumpE

Epiduralanalgesia pumpF

VACpumpG _DialysisH

1 Aa _Ba _CIab _Dabcf _Ea 2 Aa _CIab _Dabcf _Ea 3 CIabc _Dabcf _F 4 Bb _CIab _Dabcef _Ea _F 5 CIab _Dabcf 6 Aab _CIab _Dabcf _Eab _F 7 Aab _CIab _Dabcdf _Ea _G 8 Aab _CIIab _Dacf _Ea 9 Bac _Dacf _Ha 10 Aa _Bb _CIabc _Dabcf _F _G 11 CIab _Dabcf

* _Information_obtained_from_RNs.

Clariﬁcationofpurposeand/orequipmentused:

A_Endotracheal_tubea_,_tracheostomy_tubeb_.

B_CPAP_(continuous_positive_airway_pressure)a_,_NIPPV_{(non-invasive}_positive_pressure_ventilation)b_,_Oxyﬂowc_. C_CVC_(central_venous_catheter)I_,_Port-à-CathII_,_medicationa_,_nutritionb_,_blood_transfusionc_.

D_ECGa_,_CVPb_,_Artery_cannulac_,_PA_catheterd_,_{Intra-abdominal}_pressuree_,_Pulse_oximetryf_. E_Feeding_tubea_,_PEG_{(percutaneous}_endoscopic_gastrostomy)b_.

F_Epidural_catheter. G_{Vacuum-assisted}_closure. H_Intermittent_{haemodialysis.}

thesub-categories(seeFig.2)areinterwoveninthe over-allpresentationofthegenericcategories.Tosafeguardthe anonymityofthequotedinformants,thepatientsarenamed 1—11 (in accordance with Table 1) and the hospitals are designatedA—E.

Acknowledgeddependence

‘‘InthebeginningIwassosick.Ifeltgratefulthatthere wassomeonetomakethedecisionsforme!Wakingupin themorningandbeingshaved,webathed...Imean,it wasincrediblynice.And,Ifeltthatitwaspartof...my recovery.’’(A2)

Duetoalackofexperienceandknowledgeaboutbeing criticallyill,aswellasalackofstrength,theICUpatients oftenhadlimitedinterestinexercisingautonomy.Theydid notfeel vulnerable despite their condition as theyfelt a sense of safety and gratitude for being able to put their powerintosomeoneelse’shands.They wantedtobeable toaskforhelpandthusenjoyedacknowledgeddependence.

The patients experienced the technicalaspect of care as normal,a necessity and a source of security, which were non-negotiableinthislife-savingenvironment.Theycould not and did not want to interfere with the technology-relatedproceduresand,asthestaffwerealwayscloseby, thepatients handed over responsibility tothose whohad theknowledgeandexperience,i.e.thespecialists.The dif-ferenceinthelevelofattainmentcreateddocilityandthe

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A trajectory towards partnershipin care depending on state of health and mutual understanding

Acknowledged dependence Feelingtrust Surrendering Losing control Accepting dependence

Being recognised as a person

Beingnoticed

Beingasked

Being listened to Beingshown respect Beinggiven information Invited participation Being encouraged

Beinginvited toinitiate care activities Being partof the care relationship Becoming a co-partner in care Participation in dec ision-making Experiencing independence Exertingan active influenceon care Taking personal responsibility

Figure2 Overviewoftheﬁndings;maincategory,genericcategoriesandsubcategories.

patientsfeltconﬁdentthatthestaffmembers weredoing theirverybest:

‘‘...intheICU ...itwasneveranissueforme tohave viewson(caredecisions)...Irealisedthatthey(thestaff) weredoingthingsthatwerenecessary.’’(C11)

The patients’poor stateof healthcaused themto sur-render things that they usually controlled, such as their insulindosesandinjections.Atthebeginningofthe inten-sivecareperiodinparticular,mostofthepatientssuffered fromimpairedcognitionandforthatreasontheyput them-selvesinthehandsofthestaff:

‘‘...Ididn’tthinkofanything.No.Iputupwithit...Ijust letthemdecide...Iwasn’treallyawareofwhattheydid atﬁrst...No.’’(C5)

Thepatients’physicallimitations,suchasswollenhands, being connected to a ventilator or suffering from paral-ysis, sometimes led to a feeling of resignation as their strength was poor and the effort was too great. Despite explanationsbythestaffandtheircomfortingconduct,the patientsfeltalossofcontrolinthisunfamiliarenvironment. Theywerebeingmonitoredconstantlyandtheysometimes becamenervousbecauseofthewiresandtubessurrounding them.Theirdependencewaspartialortotalandtheyfound themselvesinthehandsofothers,dependent onboththe technologyandthestaff,andattimesthisscaredthem.

‘‘No,butIwasverydependent,especiallyonthe venti-lator.Itwasmylifeline.../...Iwasgratefulforitafter having...traumaticallyexperienced,littlebylittle,the lossof breathing ...Finally ...you sort of die, before

you are connected .../... scared to death that some-thingwould happento it(the ventilator)... andIwas alsoscaredthatthey...wouldleaveme...Atthe begin-ning Iwasveryscaredwhen Icouldn’tsee or hearthe nurses.’’(D8)

Beingcritically illcreated passivityand veryoften the patients accepted being persuaded as theyrelied on the staff’sprofessionalknowledge.Patientswithlongperiodsof ICU carefreely acceptedbeingdependent. Theysaidthat theylearnedtoputasidetheircontrolasawayofhandling theirvulnerablehealthcondition,whichhadbecometheir everydaylifesituation.

Beingrecognisedasaperson

The attitude of the staff caused the ICU patients tofeel conﬁrmedandsometimesunique.Theywantedtobecared forasindividuals,includingtheneedtobenoticed.

‘‘Well,theydidhavemoretime...theyhavemorestaff .../...in myroomthereweretwobeds,butat timesI wasthereonmyown,andthenalltheattentionwason me,sothatwasjustperfect.’’(E9)

Theyalsowantedtobeaskedfortheiropinion,asbeing consultedhelpedthemtoparticipateinnursing care deci-sions:

‘‘Andthenthestaffaskyouquestionsallthetime.How youfeel.Ifitisgoodinthiswayorthat,orifyouwant it anotherway, andall thetimeyou can saywhat you think.’’(A3)

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Patientexperiencesofautonomyinintensivecare 299 Thepatientshadalsoexperiencedsituationswherethere

wasnodiscussionandwheretheyweretreatedasobjects. Theirinterpretation ofthesesituations wasthatthe staff wereactingrationallyandwereusedtocaringfor heavily sedated patients. This reduced thepatients’ comfort and conﬁdence.Atthesametime,theyassumedthatincertain situations,i.e.caringforthecriticallyill,thestaffneeded tooverridethepatients:‘‘...alotofthingsaredone rou-tinely,it’ssecondnature.That’swhatIthink....theyknow best.After all itistheir profession.’’ (D8). The patients felta sense of participation when theywere listened to. The moretheir communicativeskills increased,from sim-plemimictodirectspeech,themorethepatientsfeltthat theirwillwasbeingtakenintoaccount:‘‘...theylistened to me... It was important.’’ (A1). The sensitivity of the staff,foundmorefrequentlyamongtheyoungerRNs,helped themtoworkupthecouragetoexpresstheirwishes,which couldtake theform of havingthe paceadjusted to their strength whengetting outof bed or a non-verbal expres-sionofpainbeingheeded.Therewerealsoexperiencesof

notbeinglistenedto,e.g.inrelationtoareductioninpain managementwhentheyhadnotconsentedtoareduction. Atthetimetherewasasenseofbeingbypassed butafter theyhadrecovered they hada feelingofacceptance and gratitudefornotbecomingaddictedtoopium.Sometimes newdependencesaroseasaresultoftherecoveryprocess, requiringthe stafftobeattentivein adifferentwaythan before:

‘‘Whentheyremovedmyurinarycatheter,itwasalittle chaotic./AndIdidn’treallymakeitalltheway...butI wasnotoffendedoranythingbutIdidsaythattheyhad tohurryupbecause Icouldn’tmake it muchfurther.’’ (A2)

In some situations,asin the case ofpersonal hygiene, patientsfeltexposedandwantedrespectfultreatmentand not, as some patients had experienced, insulting, imper-sonaltreatmentwiththeRNsstandingintheroomtalking notwiththepersonconcernedbutabouthim.Attimesthey neededsomeprivacywiththeirpartnerorfamilyanditwas appreciated when this need was respected and arranged wellbythestaff.Thepatientswereinmostcasesunfamiliar withtheICUsetting.Whentheywerenotabletotalkordid nothaveenoughknowledgeorstrengthtoaskquestions,it wasextremelyimportantforthepatientstobegiven infor-mation continuously. Sometimes it became a monologue, with explanations, which the patient had to adjustto as theywerenotabletogivetheirconsentalthoughtheyoften foundthistobesufﬁcienttoacquireafeelingof participa-tion.Among thenarratives,a traumaticsituation,related tonotbeinggiveninformation,aroseandcausedasenseof violationonthepartofthepatientinquestion.

‘‘Itwasactuallyadoctorwhodidsomethingbad...with the best of intentions. They wanted to see if I could breatheunaided,sotheyresettheventilator...without tellingme ...or thestaffandtheythenlefttheroom. AfteraminuteortwoIbegantopanicandthestaffdidn’t understand athinguntiltheyrealisedthatthe ventila-torhadbeenreset.FirstIwasafraidandthenIbecame angry,realisingwhathadhappened.Itwasatremendous violation.’’(D8)

Invitedparticipation

The ICU patients feltthat they weretrusted by thestaff and that they were expected to be a party in their own care.Therewasalwaysroomforquestions,whichcreated a trusting atmosphere and this encouraged the patient’s participation in the decision-making process. They were coachedand pushedintotrying differentactivities,which gavethemconﬁdenceintheirownability.

‘‘Theyweresogoodatit,tryingallthetimetopushme ... Tosee ifI couldmove myselfa littlebitin bed ... small thingsthat made... It wasastepforward every timeyoumanaged... Thenyougrew—thiswentreally well.’’(B4)

Astheirhealthimprovedandtheybecameless depend-ent, the patients felt greater strength and motivation to taketheleadregardingactivitiessuchasgettingoutofbed. Theyfeltthattheywantedtobeofhelp,initiallybytelling thestaffhowtheywantedtobepositionedinbed,andlater ontheytriedtoassistbymovingthemselves,evenifthey couldnotdosofully.Attimestheyhadanimmediatefeeling ofbothdependenceandindependence:

‘‘Well, Icouldturnmyselfinbed asIwantedto, butI couldn’t gotothetoiletbecauseIstillhadtheurinary catheterastheyweremeasuringhowmuch...becauseI hadinfusions,youknow.’’(C5)

When they were being weaned off the ventilator, the patients’feardiminished asthey becamemore andmore independentandfromtimetotimetheywereabletocope withoutthetechnology,thusincreasingtheirabilityto initi-atenursingcareactivities.Althoughtheywerestillunableto actentirelyontheirown,theysensedthattheywerebeing encouragedtobeapartofthecarerelationship,whichthey feltwasimportantfortheirself-esteemandtoactivatethe brain.Thepatientsfoundtheatmosphereinviting,asifthey existedin a‘philosophyofcare’, characterisedbymutual understanding,interplayandconsensusamongstaff,which helpedfacilitatetheirmovetowardsautonomy.Staff conti-nuitywasessentialtoatacitunderstandingthatcreateda goodcarerelationship,markedbymutualrespectand work-ingtowardsacommongoal.To beinvitedtobea partof therelationshipwasaprerequisiteforcooperationwiththe staff,withwhomtheywantedtogetonwell.

‘‘It isthe staff’sattitude towardsme andthe environ-ment that you experienceas a patientthat determine whether you want to ‘plant yourself in the grove of ﬂowers’ or not (The patient described the ward as a ‘grove of ﬂowers’.)/...ifthestaff’s attitudehad been theopposite...surelyitwouldhaveturnedoutthesame, butIwouldn’thavefeltasgoodandIguessneitherwould they.’’(A2)

Becomingaco-partnerincare

Thepatientsstatedthattheparticipatoryaspectofmaking decisionsabouttheircarewasessentialfortheirrecovery, acquiringagreaterdegreeofcontrolandbydoingso avoid-ingbeinglefttothegoodwillofthestaff.Acommonwayof beinginvolvedinthedecision-makingprocesswasthrough

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informedconsenttodifferentnursingcare activities:‘‘...

itwasconsent, astheyasked ifIwantedto getridofit

(the feedingtube) andI said yes.’’ (D8).At times, when

the patients had difﬁculty communicating their needs or wishes,this wasdone by anextof kin becominga proxy, thuscreatingasenseofsafety.

TheICUpatientsfounditdifficulttothinkof participat-ingindecision-makingintermsofself-determinationasthey wereinamoreorless constantstate ofdependence,and theypreferredtotalkabout co-determination.Thebetter thepatient’s communication skills becamethe more they feltthattheycouldinfluencecare,andgettingtoknowthe staffmadethiseasier.Thisinfluencewasexpressedas wish-ing(e.g.notusingthesame trolleyfor feedingandlower body hygiene procedures), directing (e.g. instructing the staffinhowtodecreasethepainwhentakingashower), pre-/post-planning(i.e.changingtherelativetimingofnursing careactivitiesandhencetheplanningofdailyroutines),or firmlyquestioning/rejecting differentnursing care activi-ties(e.g.whentheydidnotmakesenseorwhentheirlack ofstrengthwastootangible).When itcametoinfluencing thetechnologyithadtodowithwhat,whenandforhowlong theywereused,especiallydifferentrespiratorydevices:

‘‘...I’mtiredanditiskindofhardtobreathe...Icould say.Iwantthemask(CPAP)forawhile...then,Igotit.’’ (B4)

They didnot assignthe same levelof inﬂuence tothe medicalcarebecauseofthemanymedicalconsiderations, buttheydidletthestaffknowiftheyfeltbadduetotheir medication.Theirgradualrecoverywasapreconditionfor resumingcommand.

‘‘...Icouldalsoexertmoreinﬂuenceastimepassed,asI becamemoreandmorehealthy.Thenitwasnot...such an acutephase ...as it wasat the beginning. Besides ...Iwasaffectedlessandlessbystrongmedicationand thatcausedme tohave ...reasontoactually...make decisionsandhaveopinionsaboutthings.’’(D8)

Asthepatientwasgraduallyweanedofftheventilator, independenceandfreedomincreasedasthegeneral atmo-spherebecamemorerelaxed andthestaffadopted aless watchful approach. The patients regarded independence asgaining control,for example,of theirpersonal hygiene andtheabilitytoeatunaidedwhenthefeedingtube was removed—evensweets.Otherexamplesofgainingcontrol thatwerecitedwererelatedtothemedicationforpatients whowereusedtotakingalotofdifferentmedicines,andthe simplicity of the self-controlled pain management device thatledtoasenseoffreedomastheydidnotneedto dis-turbthestaffasoften.Althoughthepatientscouldbeina veryvulnerablesituationtheystatedthattheir responsibil-ityforassuminganactiveroleintheirrecovery,inrelationto theircapacity,wasimportantandthattheyshouldnot sim-plyacceptthingspassivelybut shouldalsomake informed decisions.Theyalsostatedthattheirattitudetotheir per-sonalcarewasaninnerforcebehindwantingtogetwelland itwasanextremelyimportantpartoftherecoveryprocess. ‘‘Ithinkthatmyattitude...isveryimportantformycare andIbelievethat...torecoveryoualsoneedthedesire

torecover...youneedtoshowthemthatyouhave... Youhavetodecide!’’(B4)

Discussion

The patients’ state of health and level of knowledge prevented autonomy from becoming fully extended par-ticipation. Nevertheless, the patients wanted to become a co-partner in care but preferred to think about

co-determination rather than self-determination, which has also been shown in an earlier study of autonomy related topatientsinneedofpalliativecare(Sahlberg-Blometal., 2000).Theﬁndingsrevealedpatients’experiencesof

auton-omytobeatrajectorytowardspartnershipincare,which

startswhen thepatients’dependenceis acknowledged by thestaffandacceptedbythepatients.Historically, partner-shipincare hasnotbeenconsideredevident as‘informed consent’ has been the primary expression of autonomy relatedtomedicalethics(RendtorffandKemp,2000). Cre-atingapartnershipcallsformutualunderstanding,leaving bothpartiesinastateofinterdependence(Lögstrup,1992). The interests of patients are intertwined with those of thehealthcareprofessionalsandarediscussed interms of patientsbeingexpertsintheirfield,acknowledgingatleast two bodies of knowledge — that of the staff andthat of thepatient(Kennedy,2003).The formerisrelatedto pro-fessionalclinical knowledge andexperience,the latterto the experiences,fears, feelings,hopesand desiresof the patients.Lögstrup(1992)referstohumansashavingawill tobe respectedand toshare power and ifa person, due toillness, is impeded in thedevelopmentof abilities and strength, other people need to intervene without taking awaythe person’sindependence. Will seemedtohave an importantroletoplayintherecoveryprocessofthepatients in this study and in becoming a co-partner in care. The patientstalkedabouttheirwilltofightasaninnerforcefor wantingtogetwell.ThisconcurswiththefindingsofWåhlin etal.(2006)regardingpatientempowermentinanICUand astudybyAlpersetal.(2012)dealingwithexperiencesof inner strengthin criticallyillpatients onventilator treat-ment,wherefactorssuchas‘thewishtogoonliving’and‘to beseen’,wereshowntopromotethisinnerstrength. Never-theless,thisstudyshowedthatrecognisingthepatientasa personandtobenoticed,asked,listenedto,shownrespect andgiveninformation,arewaysofassistingthevulnerable patientonthetrajectorytowardspartnershipincare.

IncontrasttothestudybyAlmerudetal.(2007),where clinicalvigilancewasexperiencedasmarginalisingandthe patientbecameinvisibleatthepersonallevel,thepartof careinvolvingtechnicalequipmentwasfoundtobenormal for the patients in this study and was thus not regarded as being a threat to their autonomy. They felt safe with regardtothetechnicalequipment,overwhichtheydidnot envisageexertinganypersonalinﬂuence,andtheytrusted thestaff.Inanotherstudy,whichexaminedthemeaningof beingcaredforinanICUpatientroom,theroomandspace weredescribed,amongotherthings,asaplaceoftrustand securitythroughtheinteractionwithstaff(Olaussonetal., 2013).Thelife-savingtechnologywasofparamount impor-tance for feeling safe and trust was fundamental. These differentwaysofexperiencingtechnologyintheICUdonot

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Patientexperiencesofautonomyinintensivecare 301 need tobe exclusive, astheaims ofthe studies differin

focusbutstillrevealthedifﬁcultyofbalancingthe numer-ous patient care skills in a high-tech environment (Price, 2013).

To become a co-partner in care, the patient must be thoughtofashomo capax(Ricoeur,2011), i.e.capableof health and well-being irrespective of disease and illness even in an environment such as an ICU. This presump-tionis firmlyinline withthe strategiesunderlying Health PromotingNursing(HPN)(WHO,1984).IntheHealth Promo-tionModel,nursing practiceinvolvesassumptions,suchas personshaving the capacityfor reflective self-awareness, including assessment of their own competencies, and for interactingwithboththe externalandinterpersonal envi-ronment (Pender, 1996). In a philosophical discussion on health and adaptedness, Pörn (1993) argues that humans experiencegood healthwhen thereis a balancebetween abilities,capacitiesandthewishtoadapt,andthata per-son’s health is less good/the person is ill if and only if the repertoire of adaptedness is inadequate. This defini-tionomitstheconceptofdiseaseaswellasdisease-oriented viewsonhealthandopensupalternativeviews.HPNcould be a way of focusing on a non-traditional way of under-standingpatientautonomyinintensivecare,regardingthe patientsasbeingcapableandhavingawilloftheirown. Fur-therresearchfocusingonthisperspectiveinanICUcontext wouldbeaninterestingwayoflinkingthevaluesoftoday’s societyintoahighlytechnologicalhealthcareenvironment.

Study

strength

and

limitations

In order to ensure variation and avoid ward- or setting-dependent findings, six different ICUs at five different hospitalswereincluded. The patientshadall experienced first-time admission to the ICU but formed a heterogenic sample interms of age,sex, admissionhistoryand length ofstayaswellasmedicaldiagnosis,whichstrengthensthe trustworthiness(LincolnandGuba,1985)ofthefindingswith regardtovariety.The planningandgatheringofdatatook placealongsidetheselectionofarticlesincludedinastudy (Lindbergetal.,2014),theaimbeingtoidentifyand con-structthemeaningoftheconceptofpatientautonomyina caringcontext.Theextensivereadingofarticlesrelatedto patientautonomy mayhaveinfluencedtheauthors,hence their preunderstanding. This influence couldbeseen as a prerequisiteforfacevalidityandcredibility(Patton,2002), askingprobequestionsduringtheinterviewsandgaininga betterunderstanding of howtheconcept mightappearin the data. However,discussions did take place among the authorstorevealpreunderstandingandthusenhance objec-tivitytowardstheanalysis.

Conclusions

Patients in need of intensive care wanted tobe involved indecisionsabout theircareasthiscreatesatrustingand healthycare environment. When theirstate of health did notallowthemtoparticipateinthedecision-makingprocess theywantedtobeabletosurrendercontrol.When recov-ering,theirexperiencesofpatientautonomywererelated todifferentwaysofco-determination,i.e.beinginvitedto

participate, thus leading to a partnership in care. To enhancethe autonomyof patients inintensive care there isaneedforgreaterawarenessaboutthepatientnotonly beingapassivecarerecipientbutalsobeinganactiveagent andwhereinvolvementindecision-makingandparticipation incarearecrucial.

Acknowledgements

We would like tothank the participants for sharing their experiences. Nurses who provided valuable help with recruitmentandPatrickO’Malleyforpreciouslanguage revi-sion.

Funding: Funding was received from the Blekinge

ResearchCouncil,Karlskrona,Sweden.Conﬂictofinterest:

Theauthorshavenoconﬂictofinteresttodeclare.

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