Goal setting has been described as the essence of rehabilitation (Barnes & Ward,

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Qualitative Exploration of a Client-Centered, Goal-Directed

Approach to Community-Based Occupational Therapy for

Adults With Traumatic Brain Injury

KEY WORDS • brain injuries

• community health services • goals

• patient participation • rehabilitation

Emmah Doig is PhD Candidate, School of Health and

Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland 4062 Australia; emmah.doig@optusnet.com.au

Jennifer Fleming, PhD, is Senior Research Fellow in

Occupational Therapy, School of Health and Rehabilitation Sciences, The University of Queensland and the Princess Alexandra Hospital, Brisbane.

Petrea L. Cornwell, PhD, is Research Fellow in

Speech Pathology, School of Health and Rehabilitation Sciences, The University of Queensland and the Princess Alexandra Hospital, Brisbane.

Pim Kuipers, MA, Grad Dip Rehab, PhD, is Senior

Research Fellow, Centre for Remote Health, Joint Centre of Flinders University and Charles Darwin University, Alice Springs, Northern Territory, Australia.

OBJECTIVES. We explored the clinical application of goal-directed therapy in community-based rehabilita-tion from the perspective of clients with traumatic brain injury (TBI), their significant others, and their treating occupational therapists.

METHOD. Twelve people with TBI and their significant others completed an outpatient, goal-directed, 12-week occupational therapy program. Semistructured interviews with 12 participants, 10 significant others, and 3 occupational therapists involved in delivering the therapy programs explored their experiences of goal-directed therapy.

RESULTS. Participants, their significant others, and therapists described goal-directed therapy positively, expressing satisfaction with progress made.

CONCLUSION. Goals provide structure, which facilitates participation in rehabilitation despite the presence of barriers, including reduced motivation and impaired self-awareness. A therapist-facilitated, structured, goal-setting process in which the client, therapist, and significant others work in partnership can enhance the process of goal setting and goal-directed rehabilitation in a community rehabilitation context.

Doig, E., Fleming, J., Cornwell, P. L., & Kuipers, P. (2009). Qualitative exploration of a client-centered, goal-directed approach to community-based occupational therapy for adults with traumatic brain injury. American Journal of

Occupational Therapy, 64, 559–568.

Emmah Doig, Jennifer Fleming, Petrea L. Cornwell, Pim Kuipers

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oal settinghasbeendescribedas“theessenceofrehabilitation”(Barnes&Ward,

2000,p.8)andthe“cornerstoneofeffectiverehabilitation”(Lawler,Dowswell, Hearn,Forster,&Young,1999,p.402).Goalsfacilitateaclient-­centeredapproach torehabilitationbecausetheycanbeuniquelyadaptedtoeachpersonaccordingto hisorherprofileofstrengthsandlimitations(Malec,1999).Goalsalsoprovidea concrete and meaningful way of measuring progress in rehabilitation, and goal achievementhasbeenusedextensivelytoevaluatetheeffectivenessofprograms (Joyce,Rockwood,&Mate-­Kole,1994;Lannin,2003;Ottenbacher&Cusick, 1989;Trombly,Radomski,Trexel,&Burnet-­Smith,2002).Moreover,itiswidely recognizedthattheuseofgoalsthatareimportantandmeaningfultotheclientcan have amotivating effectin termsofencouragingparticipation in rehabilitation (Malec,1999;Pollock,1993;Shut&Stam,1994).Occupationaltherapistsuse client-­centeredapproachestoprovidemeaningful,purposefulgoalsthatempower theclienttoactivelyparticipateinandimprovetheiroccupationalperformance (Pedretti,1996).Goal-­directedtherapyisdependentontheimplementationofa goal-­planningprocessthatidentifiesclient-­centeredgoals. Previousquantitativeinvestigationsandcasestudieshaveshownthattheuse ofclient-­centeredgoalplanningwithadultsundergoingneurologicalrehabilitation can improve self-­perceived and observed goal performance and satisfaction

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(Bodiam,1999;Eames,Ward,&Siddons,1999;Gagne& Hoppes, 2003; Jenkinson, Ownsworth, & Shum, 2007; Phipps&Richardson,2007;Trombly,Radomski,&Davis, 1998;Tromblyetal.,2002;Wilson,Evans,&Keohane, 2002).Directinvolvementinindividualizedgoalplanning hasbeenshowntoresultinbettermaintenanceoftreatment gainsforclientswithtraumaticbraininjury(TBI)thanfor agroupwithlesserinvolvementingoalplanning(Webb& Glueckauf,1994).Aclient-­centeredapproachinvolvesgoals thataresetbytheclientonthebasisofhisorherowndefi-­ nitionoftheproblems;theapproachenablesgreaterself-­ determinationandcontrolandenhancestheperson’spoten-­ tial for active participation (Pollock, 1993). Because occupational performance encompasses activities in the areasofself-­care,productivity,andleisureandisinfluenced byenvironmentalandsocietalfactors(Reed&Sanderson, 1980),itisuniquetoeachpersonandrequiresindividual-­ izedmeasurementtoolssensitivetovaryingneedsandsitu-­ ations(Pollock,1993).

Client-­centered rehabilitation has been described by peoplewithlong-­termphysicaldisabilitiesasindividualiza-­ tionofprogramstomeettheirneeds,includingpreparation forlifeintherealworld,mutualparticipationwithhealth professionalsindecisionmakingandgoalplanning,mean-­ ingful outcomes, and family involvement throughout the rehabilitation process (Cott, 2004). Because of the estab-­ lishedefficacyofclient-­centeredapproaches,thisstudyused aclient-­centered,goal-­planningapproachtoguidecommu-­ nity-­based occupational therapy programs for a group of peoplewithsevereTBIwhowererecentlydischargedfrom inpatientbraininjuryrehabilitation.

Challengestoachievingaclient-­centered,goal-­directed approachtotherehabilitationofpeoplewithTBIhavebeen widely documented and include cognitive impairment, reduced motivation, and diminished self-­awareness. Typically,peoplewithTBIdemonstratereducedself-­aware-­ ness and tend to underreport impairments (Sherer et al., 1998;Toglia&Kirk,2000);theythereforemayhavediffi-­ cultyidentifyingrealistictherapygoals(Fleming&Strong, 1995),maynotrealizetheneedfortherapeuticintervention and,consequently,demonstratepooreroutcomes(Fischer, Gauggel,&Trexler,2004).Moreover,goalsettingrequires clientparticipationintheprocess,andpassivityofclientshas beenidentifiedasabarriertogoalsetting(Seigert&Taylor, 2004).Cognitiveandmotivationalfactorsassociatedwith TBImayfurtheraffecttheclient’sabilitytoengageingoal planning,thuspotentiallylimitingitsusefulnesswiththis population(Fleming&Strong,1995).Researchinvestigat-­ ing the impact of brain injury–related changes on client participationingoalplanningislimited(Fischeretal.,2004; Kuipers,Foster,Carlson,&Moy,2004). Multiplefactorsthatareuniquetothecommunityreha-­ bilitationcontextneedtobeconsideredwhenapplyinga goal-­directedrehabilitationapproach.Thegoalsofpeople withbraininjuryafterdischargefromthehospitalbecome broader and more complex in nature (Seigert & Taylor, 2004) and move from a focus on physical rehabilitation towardamorevariedfocuswithgreateremphasisonreinte-­ grationovertime(Kuipersetal.,2004).Accordingly,the contextofcommunityrehabilitationwillaffectthedynamic ofgoalsetting.Mostresearchongoalsetting,however,has occurred in inpatient settings. A study that explored approachestogoalsettingfromtheperspectiveoftherapists workinginaninpatientgeriatricrehabilitationunitfound thattherapist-­directedand-­ledapproachesweremorecom-­ monly described in practice than were client-­centered approaches(Leach,Cornwell,Fleming,&Haines,inpress). Anotherstudyfoundthatclientsinaninpatientgeriatric stroke setting showed a lack of participation in the goal-­ settingprocess(Wressle,Oberg,&Henriksson,1999).In addition,staffmembersworkingprimarilyininpatientneu-­ rologicalrehabilitationunitsreportedthatitwasoftendiffi-­ cultforclientstosetgoalsintheearlystagesafteronsetof significantdisabilityandidentifiedhomevisitsasusefulfor assistinginidentificationofclients’needs,roles,andfamily conflicts(Playfordetal.,2000). Thesefindingscontrastwiththeopinionsoftherapists workingwithpeoplewithbraininjuryincommunity-­based rehabilitationsettingswherethe importanceof therapists’ developinggoalswithclientsratherthanimposinggoalswas emphasized(Kuipersetal.,2004).Oncedischargedfromthe hospitalintothecommunity,familymembersareincreas-­ inglyinvolvedingoalsetting(Seigert&Taylor,2004).The homesettingismoreconducivetoinvolvingthefamilyin goalsettingbecauseofincreasedaccesstofamilymembers andopportunitiestoinvolvethefamily(Doig,Fleming,& Kuipers,2008).Familyinvolvementingoalsettingmayassist withobtainingaholisticunderstandingoftheclient’ssocial supportandhomesituationandidentifyinggoals(Kuipers etal.,2004),anditmaybeparticularlyhelpfulinsetting realistic therapy goals when the client has impaired self-­ awarenessandtendstounderreportimpairments.

Goal-­directedapproachesinrehabilitationsettingshave mostly been evaluated using quantitative methodologies. Improvements in goal performance after participation in acquiredbraininjury(ABI)rehabilitationprograms,includ-­ ingpeoplewithTBI,havebeenreportedinoutpatientclinic rehabilitationsettings(Phipps&Richardson,2007;Trombly etal.,1998,2002;Webb&Glueckauf,1994)andcommu-­ nity-­basedgroupprograms(Jenkinsonetal.,2007).Astudy byLannin(2003)reportedimprovementsingoalperfor-­ mance using goal attainment scaling (GAS; Kiresuk &

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Sherman, 1968) in a community rehabilitation program primarilyforpeoplewithABI.Thesefindingsindicatethe successofgoal-­directedprogramsforpeoplewithABI.Some studiesofpeoplewithTBI,however,haveexcludedpartici-­ pantswithimpairedself-­awarenessbecausetheyhavebeen unabletoidentifyproblemareasandsetgoals(Tromblyet al.,1998,2002).Moreover,SeigertandTaylor(2004),in discussingthetheoreticalaspectsofgoalplanninginreha-­ bilitation,reportednotonlytheneedtolookat“whatworks” butalsotheneedtoexplain“how”aninterventionworksto guidedevelopmentofeffectivetechniques. Althoughquantitativeinvestigationslendevidencefor whatworksforgroupsofparticipants,qualitativeinvestiga-­ tionsenableanin-­depthanalysisoftheimpactofmultiple intrinsic (e.g., injury factors including impaired self-­ awareness) and extrinsic (e.g., contextual) factors on the process of goal planning and goal-­directed therapy. Such investigations also explain why goal planning and goal-­ directedtherapymayworkorfailinspecificcasesinwhich multiple,interactingfactorsaffectoutcomeandsubsequently informadvancementsinrehabilitationpractice.Moreover, giventheincreasedlikelihoodofinvolvementoffamilyin communitysettings,qualitativestudiestakingintoaccount theperspectivesofthemultiplepartiesinvolvedingoalplan-­ ningandgoal-­directedrehabilitationprovideanopportunity tothoroughlyexploretheseprocessissues. Previousqualitativestudiesthathaveexploredgoalplan-­ ningandgoal-­directedtherapyinneurorehabilitationhave primarilyfocusedongroupsofpeoplewithstroke(Lawleret al.,1999;Leachetal.,inpress;McAndrew,McDermott, Vitzakovitch, Warunek, & Holm, 1999; Playford et al., 2000; Wressle, Eeg-­Olofsson, Marcusson, & Henriksson, 2002; Wressle et al., 1999). Of those studies that have described and discussed goal planning and goal-­directed rehabilitationforpeoplewithABI,theperspectivesandopin-­ ionsofstaffmembers(i.e.,therapists,doctors,ornurses)have beendescribedinisolation(Kuipersetal.,2004;Leachetal., inpress;Levack,Dean,McPherson,&Siegert,2006;Playford etal.,2000;Sumison,2004).Onlyonestudyinvestigated goalsettinginthecommunityrehabilitationcontext(Kuipers etal.,2004),andthestudywasnotspecifictoTBI. Studieshavecomparedtheperspectivesofclientswith stroke(McAndrewetal.,1999;Wressleetal.,1999)and clientswithspinalcordinjury(MacLeod&MacLeod,1996) withstaffperspectivesaboutgoalsettingandrehabilitation. Findingshavedemonstratedthatperspectivesofclientsand staffdifferongoalplanning(MacLeod&MacLeod,1996; McAndrewetal.,1999)andtherebyhighlightthebenefitof consideringandcomparingmultipleperspectives.Moreover, mostpreviousstudieswithABIsampleshaveexploredthe goal-­planningprocessorgoalcontent(Kuipersetal.,2004; Leachetal.,inpress;McAndrewetal.,1999;Playfordetal., 2000;Wressleetal.,1999)withlessexplorationofthetreat-­ mentvalidityofgoalsortheimpactthatgoalshaveonthe processofrehabilitationandoutcomes(Lawleretal.,1999; Levacketal.,2006;MacLeod&MacLeod,1996;Wressle etal.,2002). Despitetheemergingemphasisonclient-­centeredness andgoalsettingintheliterature,nostudieshavereported andcontrastedtheperspectivesofclients,significantothers, and therapists on goal-­directed therapy in a community context. In this study, we used a qualitative approach to examine the experiences of clients, family members, and therapistsinvolvedinclient-­centered,goal-­directedtherapy; the aim was to gain further insight into the benefits and challengesofthisprocess.

Method

Research Design Weusedaqualitativeapproachusingsemistructuredinter-­ views(Mason,2002)ofparticipants,theirnominatedsignifi-­ cantothers,andtreatingoccupationaltherapist.Participants were12peoplewithTBIlivinginthecommunitywhohad beenrecentlydischargedfromaninpatientbraininjuryreha-­ bilitationprograminBrisbane,Queensland,Australia,and 10 of their nominated significant others. All participants werereceivingoutpatient,clinic-­basedoccupationaltherapy rehabilitationatalargemetropolitanhospital.

Participantswereeligibletobeincludedinthestudyif they(1)werebetweenages16and65;(2)hadrecentlybeen discharged from inpatient rehabilitation in the Princess AlexandraHospitalBrainInjuryRehabilitationUnit(BIRU); (3)hadadiagnosisofTBI,asevidencedbylossofconscious-­ ness,aperiodofposttraumaticamnesia,orcomputedtomog-­ raphyscandiagnosis;(4)communicatedinEnglish;(5)had asignificantotheravailabletoparticipateinthestudy;(6) werereferredforanoutpatientoccupationaltherapypro-­ gramattheBIRUthatwasanticipatedtobeofatleast18 weeks’ duration; and (7) had given informed consent or guardianconsent.Exclusioncriteriaforthestudyincluded (1)thepresenceoffactorsthatwouldpreventengagement incommunity-­basedrehabilitationonthegroundsofriskto the visiting therapist or the participant, (2) low level of arousal,(3)coma,(4)severepersistingconfusion,(5)signifi-­ cantdiagnosedpremorbidpsychiatricdisorderorneurologi-­ calinjury,and(6)significantdrugoralcoholproblemin whichthepersonwasnotactivelyinvolvedinaprogramof treatment. Aspartoftheirinvolvementinthisresearchproject,the participants received a 12-­week program of goal-­directed

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occupationaltherapyinadditiontotheirregularoutpatient occupationaltherapyprogramattheoutpatientunit(day hospital).Individualizedgoalswereusedtodirectthecon-­ tentofthetherapyprogram,whichwasconductedbythree qualified, experienced occupational therapists who were employedbytheresearchteam.Thetherapyprogramcon-­ sistedofsixtherapysessionsintheparticipant’shomeenvi-­ ronmentandsixsessionsinthedayhospitalsetting.The threetherapistswerealsoparticipantsintheinterviewphase ofthestudy. Participants Participantswere10menand2womenranginginagefrom 18to43years(mean[M] = 24.7,standarddeviation[SD] =6.9).ThemeaninitialGlasgowComaScale(Teasdale& Jennett,1974)scorewas6(SD =4.2),andtheaveragelength ofposttraumaticamnesiawas86.6days(SD =56.4,missing =2).Meanlengthofstayinacutehospitalcarewas66.7days (SD =40.3),andmeanlengthofinpatientrehabilitationwas 140.1days(SD =117.8).Ondischargefrominpatientreha-­ bilitation,theaverageDisabilityRatingScale(Rappaport, Hall,Hopkins,Belleza,&Cope,1982)scorewas5.6(SD = 1.7)andaveragetotalFIM™(Hamilton,Grainger,Sherwin, Zielezny,&Tashman,1987)scorewas108.9(range=95– 121,SD =9.4).Ondischarge,theaveragetotalSelf-­Awareness

of Deficits interview (Fleming, Strong, & Ashton, 1996) scorewas4.66(range=0–9,SD =2.9);mostparticipants

demonstrated either moderate (n = 5) or severe (n = 3)

impairment of self-­awareness. All participants’ significant otherswhowereinterviewedwereparentsandresidedwith theparticipant.Allthreeoccupationaltherapistsinvolvedin thestudywerefemale,hadbeenqualifiedfor>8years,and hadexperienceinbraininjuryrehabilitationrangingfrom 1.5to18years. Procedures Ethicalclearancewasobtainedfromtherelevanthospital anduniversityethicscommitteesbeforecommencement.A client-­centeredgoal-­planningprocessusingtheCanadian OccupationalPerformanceMeasure(COPM;Lawetal., 1991)andGAStookplacebeforeeachparticipant’sinvolve-­ mentinthe12-­weekoccupationaltherapyprogram.Two participants(P12andP13)werenotabletoidentifyprob-­ lemareasandprogramgoalsduringadministrationofthe COPM. A therapist-­directed approach (Leach et al., in press)wasnecessaryinthosecases;itinvolvedthepartici-­ pants’agreeingtohavetheirsignificantothersandusual inpatientoccupationaltherapistconsultwiththeprincipal researcher, Emmah Doig, to assist with identification of problemareastoidentifypotentialgoals.Theproblemareas andpotentialgoalswerethennegotiatedandagreedonby the2participants.Intotal,44goalattainmentscaleswere developedforthe12participants. EmmahDoigconductedaninterviewattheconclusion ofthe12-­weekprogram.Theinterviewexploredtheexperi-­ encesandopinionsoftheparticipantsandtheirsignificant othersinrelationtotheirinvolvementinthegoal-­directed occupationaltherapyprogram.Asemistructuredformatwas usedtoensureconsistencyacrossallinterviewswhileallow-­ ing participants the freedom to raise issues not directly relatedtothequestions(Britten,1995).Strategiessuggested byPatersonandScott-­Findlay(2002)forusewheninter-­ viewingpeoplewithTBIwereadopted.Therecommenda-­ tionsincludeappropriateinterviewscheduling,flexibleinter-­ view process, and priority questions asked first (to avoid fatigueandoverstimulationandmaximizeattention)aswell asuseoftheinterviewee’swordstofocusmoredirectques-­ tioningandpromptrecall.Allinterviewswereundertaken attheparticipants’homes.Semistructuredinterviewswere alsoconductedwiththethreetherapistswhoundertookthe goal-­directed therapy programs with the participants. Therapist 1 had completed the therapy program with 6 participants,Therapist2with3participants,andTherapist 3with3participantsatthetimeofconductingtheinter-­ views.Theinterviewsweredesignedtodrawontheinter-­ viewee’sexperienceandopinionsaboutdeliveryofthegoal-­ directed rehabilitation program. All interviews were audiotapedwiththeconsentoftheparticipantsandtookan averageof30mintocomplete.

Data Analysis

Interviews were transcribed verbatim, and the interview responsestothequestionsrelatingtogoalplanningandgoal-­ directedtherapywereanalyzed.EmmahDoigreadthetran-­ scriptstobecomefamiliarwiththecontentandusedthebasic principlesoftheframeworkmethodtothematicallyanalyze thedata,usinganon–cross-­sectionalorganizationofthedata toidentifychunksandsummarizethecontentofeachsetof interviews (Spencer, Ritchie, & O’Connor, 2003). Later, initialthemeswereidentifiedandgroupedintocategoriesand subcategoriesforeachsetofinterviews,andsalientcommon themesweresummarizedandcomparedwithinandacross thethreesetsofinterviews(Ritchie,Spencer,&O’Connor, 2003).Toensurequalityandrigor,oneinterviewfromeach group(participant,significantother,andtherapist)wascoded independently by Doig and a research assistant. The two codersmetlatertocomparecodesanddevelopacategoriza-­ tion framework by consensus. The agreed categorization frameworkwasusedtocodealltranscripts,andthroughout the analysis further colleague checks (Patton, 2002) were carriedouttoensureconsistencybetweenanynewcodesand categoriesidentified.NVivoqualitativedataanalysissoftware

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(Version 2.0; QSR International, Melbourne, Victoria, Australia)wasusedtoassistwithorganizationandsynthesis ofthedata.

Results

Theparticipants,significantothers,andtherapistsnotedthat the goal-­planning process and goal-­directed therapy were positive.Severalthemeswerecommontoallgroups,and somethemesweremorestronglyemphasizedbysomegroups thanothers.

Themes Common to Participants With TBI, Their Significant Others, and Therapists

Fourthemeswerecommontothethreegroupsinterviewed: (1)provisionofstructure,(2)goalsandmotivation,(3)goal ownership,and(4)impactofawarenessonparticipation. Thefirstthemeemphasizedtheimportanceofgoalsin providingstructureforrehabilitation.Therapistsidentified thathavinggoalsmadeit“quiteclearaboutwhatwewere wanting to achieve” (Therapist [T]2), made expectations

aboutthedesiredoutcomeclear,anddirectedthecontentof the therapy. Structuring therapy according to goals was facilitatedbythe“factthattheyweresospecific,thatreally helped”(T1).Onetherapistaskedclientstoratethelevelof importanceofeachgoalatthebeginningofeachsessionand foundthepracticebeneficialbecause“Ialwaysknewevery singlesessiontheywerecompletelyfocusedandmotivated onwhatweweredoing”(T1). Thisconceptofstructurewas alsocommonlyraisedbyfamilymembersandwasexempli-­ fiedbystatementssuchas“oncewehadthegoals,weknew whatwewereaimingfor”(significantother[SO]ofPartici-­ pant[P]7)and“shewouldbasethetherapysessionsaround achievingthosegoals”(SOofP4).Thisstructureprovided bythetherapistwasseenasnecessarybecause“shewasn’t expectinghimtostructurethesession...shestructuredit, andIdon’tthinkthatself-­directedstructureispossible,you knowthethingsthatneedtobedonetoachievethesegoals andguidethemthroughthat”(SOofP4).Participantswith TBI identified that goals provided a “focus” (P11) and “helped keep you on track” (P12) and that having goals providedstructurebeyondthetherapysessionbecause“it mademestartprioritizingthingsaroundinmyday...it sortofmademestarttothinkaboutthosethings”(P5). Thesecondthemeconcernedthemotivationalaspects ofgoals.Havinggoalshelpedbecause“itgavehimsome-­ thingtostrivefor”(SOofP9).Likewise,“itcouldbecome prettyboringifyouaren’tawarethat,‘Hey,thisisallgoing toleadtowardsomething’”(SOofP4).Moreover,when talkingabouthisdaughter’sreactiontoachievingagoal, anothercommented,“Ifyou’vemasteredthisonewell,you wanttogoontothenextone”(SOofP6).P3described goalachievementasmotivatingbecause“itgaveyoutar-­ gets to achieve, and once you achieved them you’d go, ‘Welldustitup,thatwasdone,’andyouknowthatyou candoitandyoucancontinuetodoit.”T2describedthe time one of her clients achieved her first program goal: “Whenshewasabletodryherselfindependently,Ithink webothhadtearsbecauseitwassoexciting....[S]hemade statementslike,‘WellnowIknowIcandothis,Icantry otherthings.’” Sevenoftheparticipantsidentifiedthethirdtheme,goal ownership.Theparticipantsmadestatementssuchas“itwas me”(P1),“you’redoingwhatyouwanttodo”(P12),“they werefromme,theyweretodowithmeandtheywerefor me”(P3),and“IreallywantedtodothemsoIwoulddoall the steps” (P11). Satisfaction was related to choosing the goalsforP8,whostated,

Ifyouleaveituptotheindividualtopickgoalsorthings that are essentially problems for them and they are working towards that, they can see the benefit of their improvements,andobviouslythey’realotmoresatisfied withthat. P5describedhisexperienceofthegoal-­directedprogramas being“askedwhat thingsIwouldliketoimprove,”which hecontrastedwithhisexperienceofothertherapies,stating, “Youdon’thaveyoursayofwhatyouwanttodo.”Goal ownershipfromthetherapists’perspectivesmeantthatthe goalsshouldbe“setwiththeclientinput”(T2)andthatthe clientshouldperceivethelevelofgoalachievementasaccept-­ able,whereby“ifyoujustsetthegoaltotwostepsforward towhatyouthinkthey’llachieve,theywon’tacceptitand thereforemaynotengageinit”(T1).

Moreover, one therapist explained that the therapy tasksshouldberelevanttothegoal.Inrelationtothelong-­ termgoalofreturningtodriving,T1explainedthat“physi-­ callymovingthegearsandmovingyourfootonthepedals” wouldbemoreacceptabletotheclientthan“gettingthe coordinationinyourfeetbetter.”Familymemberscom-­ monlyagreedthatitwasimportantthatthegoalsbethe person’sownbecause“ifyoudon’tlikesomething,youare notgoingtoputyourheartintoit”(SOofP6)and“Ithink ifyou’dsetthegoalsforhimanditwasn’treallywhathe thoughtheneeded,hewouldn’thaveworkedashardatit” (SOofP5).Familymembersdidnotalwaysagreewiththe goalschosenbytheparticipantsandsawotherpriorities, buttheymostlyacknowledged“thatwashisgoal,it’snot mine,sosure”(SOofP8). Thefinalthemecommontoallgroupswasthataware-­ nessofproblemscanchangeandparticipationcanimprove withexperience.TheSOofP3stated,“Atthebeginning, itwasjustlike,youknow,IhavetodothisandIhaveto

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dothat,butnowherealizesthatheisactuallyprogressing, heisactuallydoingreallywell.”P7describedrealizingthat hehadaprobleminhisgoalareaofnotetakingafterwork-­ ingonit.T1,indescribingtheimpactofprovidingtherapy andgivingfeedbackaboutperformancetoherclients,iden-­ tifiedthat someofthemgotalotofself-­awarenessandthenrealized thatactuallytheywereonly2steps[alongtheway]and ...togettothe10stepsitwasgoingtotakethemalot longerthantheyexpected,sotheyweremorerealistic.

Themes Common to Participants With TBI and Family

Threethemeswerecommontoparticipantsandtheirsig-­ nificantothers:(1)challenges,(2)familyinvolvement,and (3)satisfactionandprogress.

Somefamilymembersraisedtheconceptthatinitialgoal setting was challenging, particularly in terms of needing moretimelivingwiththepersontogettoknowhisorher problems:“Ifwe’dhadhimhomeforaperiodoftimeand thenwehadtosetgoals,wewouldhaveafarbetterideaof wherehewasat”(SOofP12);“[I]twastimeconsuming, andIwasthinking,‘Idon’tknowwhathisgoalsare,justget better’”(SOofP7).Bycontrast,otherfamilymemberswere goalorientedandfamiliarwithgoalsetting,statingnotonly theimportanceofgoalsbutalsothatgoalsareapartoflife: “Imean,thatiswhatwealldoinlife,youknow,youset yourselfagoal...thenyourlifeisdirectedtowardsattaining thatgoal”(SOofP4). Thefamilymembersofthe2participantswhocould notidentifytheirowngoalsexplainedwhatfactorstheyfelt affectedtheabilitytosetgoals,includingmemoryimpair-­ mentandreducedself-­awareness.Forexample,P12’smother stated that “he wasn’t understanding what goals meant.” Some other family members also felt that their relatives neededassistancewithplanninggoals,stating,“Youneed someonetotalkyouthroughitand,youknow,helpyou understand,tofinetuneitdowntotheimportantmainfew things” (SO of P4) and “Sit down and try to talk him throughprocesses,sothenitmadehimthinkandthenhe cameupwithacoupleofideas,andthatwasamuchbetter approach”(SOofP13). Threeparticipantsstatedthatinitialgoalplanningwas complex.P3describedsettinggoalsas“abitcomplicatedat thestart...justconfusing,whatshouldIwanttodo,”and P8used“intuition...Ididn’trealizehowmuchofaprob-­ lemallofthosethingswouldhavebeenstillfurtherdown thetrack.”Others,however,felt“itwasprettyeasytofind thegoalsbecauseitwasprettyeasytoseewhatIwashaving troublewith”(P7). Familyinvolvementwasthesecondthemecommonto participantswithTBIandtheirsignificantothers.Several

participants described family members as important for encouragement:“He’dstarttonoticemywalkinggettinga bitbetter,mybalance...soyeah,Ithinkit’sgoodtohave someoneclosetoyouinvolved”(P10),and“withherpush-­ ingmeI’ddoit,I’ddoabetterjob”(P9).Someparticipants describedfamilyinvolvementingoalplanningandtherapy aspositivebecause“mumwouldseememostoften,she’s definitelyprobablythemostknowledgeableaboutmycur-­ rentsituation”(P8)and“mysisterknowsmemorethanmy therapistsoshewouldtellherhowI’mimproving”(P7).By contrast,P3felthismother’sinvolvementingoalplanning wasnotnecessarybecause“shedidn’tknowexactlywhatI’m thinking at the time about what I find difficult.” Several familymemberstalkedabouttheirinvolvementinthegoal planningas“representingthefamily,tobeasupport”(SO ofP7)andasimportantbecausefamilyknowledgecanassist ingoalplanning(e.g.,“IfeltlikeIhadtotellyouwherehe wasataswellfrommypointofviewsoyoucouldhelphim” [SOofP9]). Thethirdandstrongestthemecommontoparticipants withTBIandtheirsignificantotherswastheconceptofsat-­ isfactionwithprogress.Allparticipantsstatedthattheyfelt havingprogramgoalswasbeneficialorexpressedsatisfaction withprogressmadeontheirgoals.Forexample,P6described hergoalachievementbysayingitmadeherfeel“good,yeah ecstatic,overthemoon.”Goalsweredescribedas“specific goals”(P4),necessaryinthat“Ididn’twanttodoothersthat Idon’treallyneedtodo”(P4),andachievableas“Icoulddo it”(P1)and“bytheendofit,thosegoalswereaccomplished” (P3).Familymembersalsoexpressedtheirsatisfactionwith theirrelatives’progressintheirgoalsandgenerallyagreedthat theuseofgoalstodirecttherapywasabeneficialprocess.

Themes Common to Therapists and Family

Threethemeswerecommonlyraisedbytherapistsandsig-­ nificantothers:(1)cognitivefunction,(2)goalevolution, and(3)priorities. Inrelationtocognitivefunction,severalfamilymembers describedhowmemoryimpairmentaffectedrecallofgoals. Forexample,themotherofP12explainedthathersonhad difficultyunderstandingthepurposeoftherapyandengag-­ ingintherapy,asevidencedbystatementssuchas,“Istill don’tseewhytheyaremakingmedothesethings.”Moreover, twofamilymembersemphasizedthatpoorself-­awareness affectedgoalplanning“giventhathethinkshisabilitytodo thosethingsisfineand‘whyshouldIdothem?’”(SOof P12)and“hedidn’thavethatinsightintohisinjuryorthe depthofitortheproblemshewashavinginalotofareas” (SOofP13).

Several cases described by the therapists highlighted howgoalscouldbeusedastoolstomotivateandimprove

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participationintherapydespitecognitiveimpairment.T2 describedworkingwithclientswithmemoryandcommu-­ nicationdifficulties:“Ingeneral,Ithinktheyneededmore guiding from me to come back to, well, these are your goals,andremindingandgoingthroughagain,arethey important,whyaretheyimportant.”Providingfeedback aboutperformancewasalsoobservedtoimprovethepar-­ ticipants’abilitytosetmorerealisticgoalsovertime,and therapists observed participants’ motivation for tackling futurechallenges andgoalsto bespurredbyinitial goal achievements. Poorself-­awarenessandmemoryimpairmentreportedly affectedclients’abilitytorecallgoals,understandtheirprob-­ lemareas,andparticipateintherapy.T2stated,“Hefound itdifficulttoratetheimportanceorreallysometimeseven seewhywewereworkingonthings,becauseofhismemory,” andshedescribedtheimpactofdepressionon1participant’s progress, stating that “amotivation and the symptoms of depression had such a big impact on those goals and his therapyinworkingtowardsthosegoals.” Allthetherapistsexpressedthatgoalsevolvedascircum-­ stanceschangedorproblemsbecameclearerovertime,and theynotedtheconsequentneedto“havetheflexibilityto adaptthem”(T3)ortoformnewgoals,which“neededto, Iguess,beincorporatedorincludedinwhatwewerework-­ ingon”(T2).Theneedtochangegoalsorformnewgoals occurredinsituationsinwhichgoalachievementcameear-­ lierthanexpected,inwhichagoalwastoochallenging,in whichnewproblemsemerged(suchasdepression),orthe person lost interest in a goal area. T2 explained that her awarenessofherclient’sproblemwithdepressionemerged astheirtherapeuticalliancedeveloped,stating“Thatinfor-­ mationwas[of]thenaturethatitwouldn’tcomeoutatthe start.”Onthewhole,familymembersstatedthatthepro-­ gramgoalssetwereappropriatetotheparticipants’needsat thattime(e.g.,“Atthatstage,thatwaswhatwaschallenging him,Isuppose”[SOofP8]and“Ithoughtwhathechose wasgoodforhimatthatstage”[SOofP5]).AnotherSO stated,“Youcouldseethatprobablytheyweren’tthegoals thatneededtobesetastimewenton,”althoughshealso stated that “at the beginning they were very important, whichiswhytheybecamethegoals”(SOofP12).

Afinalthemerelatedtotheneedtoprioritizegoals. T1, when reflecting on her therapy programs with the participants,feltthatthefocuswaslostwhenmultiplegoals wereworkedonatonetime.Shestated,“Justpickingthe onesthatweretheirabsolutepriorityandreallydoingthat thoroughlyanddoingitfromtheoutsetandgettingabit ofanoutcomethereandthenmaybepickingupanother couple” was preferable to working on goals in parallel. Focusingtherapyononeprioritygoalatonetimewasalso

raisedbythefatherofP6,whostatedthat“itwouldbea loteasiertofocusononegoalatatime,andoncethatgoal isachieved,workonthesecondgoal,andsoon.”Atthe same time, this participant pointed out that the most importantthingsshouldbeworkedonfirst.Thisfamily memberdefined“importantgoals”asskillsthatenabled independence,statingthat“she’sbeendoingalotofcook-­ ing and things, but even without the cooking, you can alwaysorderMcDonald’sorpizza,youcanstillbeinde-­ pendent,butyoucan’tbeindependentifyoucan’thavea showeronyourown”(SOofP6).

Discussion

Thisstudydescribedtheperspectivesofparticipantswith TBI, their significant others, and occupational therapists regardingtheirexperienceofagoal-­directed,12-­week,indi-­ vidualizedoccupationaltherapycommunityrehabilitation program. The client-­centered approach to goal planning resultedinmostparticipants’generatingtheirowngoals;all threegroupsofparticipantsemphasizedtheimportanceof clients’owningtheirgoals.Theparticipantsexpressedsatis-­ factionwithprogressmadeandwiththeprocessofgoal-­ directedtherapy,althoughtheyidentifiedsomechallenges. Inparticular,for2participantssevereimpairmentsofmem-­ oryandself-­awarenesswerereportedasbarrierstogenerating goals and attaining a sense of goal ownership. The link betweenimpairedself-­awarenessafterTBIanddifficulties withsettingrealisticgoals(Fleming&Strong,1995)and achievingrehabilitationoutcomes(Fischeretal.,2004)has beenpreviouslyreported. Inthecurrentstudy,therapistsandsignificantothers emphasizedthenegativeeffectofimpairedself-­awareness,in somecases,onabilitytoidentifyproblemareas.Goalswere described as a tool, however, that can help increase self-­ awarenessandparticipationovertimeastheclientreceives feedbackaboutprogressduringengagementingoal-­related activities. Previousstudiesinthisareahavetendedtofocusonthe goal-­planningprocessandhavereportedself-­awarenessasa barriertorealisticgoalplanning,whereasthisstudyhigh-­ lightsthevalueofprovidingsupportwithsettinggoals,espe-­ ciallyforclientswithimpairedself-­awareness.Inabilityto identifyprogramgoalswasnotanexclusioncriterioninthis study,andintwocasesamoretime-­consuming,therapist-­ directedapproachwasnecessarytoidentifygoalstoenable initialengagementintherapyactivities.Thedevelopment ofawarenessofproblemsandmorerealismabouttargets overtimewascommonlydescribedasaresultof(1)rapport building, potentially enhanced within the context of a familiar environment in which the client may have felt

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moreateasetocommunicate;(2)provisionoffeedback fromthetherapistaboutperformance;and(3)theexperi-­ ence of performing familiar tasks. Therefore, although impairedself-­awarenessmayinitiallyinvolvealackofgoal ownership,itmaynotalwaysbeabarriertoparticipationin goal-­directedtherapyinthecontextofcommunityrehabili-­ tationthat includes family involvementand supportina collaborativeapproachtogoalplanningandrehabilitation.

As described in the literature (Fischer et al., 2004; Fleming&Strong,1995;Kuipersetal.,2004),somepar-­ ticipantsandtheirSOsidentifiedtheprocessofgoalplan-­ ning as challenging because of impaired self-­awareness, reducedmotivation,andcognitiveimpairments.Thefind-­ ingsofthisstudyemphasizedthatfamilymembersperceived astructuredgoal-­planningprocess,inwhichthegoalplan-­ ningandtherapyprocessisexplainedandfacilitated,tobe valuablefortheirrelativeswithTBI.Familymembersand participantsfeltthatfamilyinvolvementonthewholewas positiveforgoalplanningandthatSOsshouldbeincluded aspartnersintheprocess.AlthoughparticipantsandSOs interviewedinthisstudyappearedtobeagoal-­orientated group(inthattheyexpressedfamiliaritywiththeconceptof goals),theliteratureaboutgoalscautionsthattheconceptof goalsandchangingoneselftoattainsomethinginthefuture (Kielhofner&Barrett,1997)isnotafamiliarconcepttoall, andaperson’smeaningandperspectiveongoalsdependson hisorherpastexperience. Thefindingsofthisexploratorystudyindicatethatonce goalsareset,theyappeartohavebenefitsforthetherapy process.Thosebenefitsareespeciallyhelpfulinovercoming someofthecommondifficultiesforpeoplewithTBI.First, representativesfromthethreegroupsidentifiedthevalueof goalsinprovidingstructure;thisbenefithaspreviouslybeen citedintermsofdirectingrehabilitationservicesandaiding inorganization(Levacketal.,2006)andcreatingaprocess whereby regular review of performance in terms of goal achievement occurs (Kuipers et al., 2004; Levack et al., 2006).Participantsinterviewedinthisstudyhighlightedthat havinggoalshelpedthemfeelorganizedandgavethema focus.Havingaconcreteplantoguideactivitiesandhelp withplanningfuturegoalsmaybeparticularlyvaluablewhen apersonhasexecutiveproblems,suchaspoorplanningskills. Therapistsalsohighlightedthegoalreviewprocessasvalu-­ ableforstructuringsessionsandasatooltomotivateand focuspatientsatthestartoftherapysessions. Thisstudyidentifiedtheimportanceofatherapeutic alliancebetweentherapistsandclientsthatallowsopencom-­ munication and confrontation about difficult discussion topics;thistypeofalliancehaspreviouslybeenemphasized in the context of an outpatient clinic-­based brain injury rehabilitationprogram(Schonberger,Humle,&Teasdale,

2006).Thissituationmaybeenhancedinthecommunity setting,wheretherelationshipbetweentherapistandclient maybemoreofapartnershipwithintheperson’sownhome environment(Cott,2004)andthetherapistmayberegarded as more of a friend than as an expert–teacher (Koch, Wottrich,&Holmqvist,1998).Thisopencommunication inamorerelaxedatmospheremayencouragetheprovision offeedbacktoenhanceself-­awarenessandsupportandfacili-­ tateclientsintakingonnewgoalsandchallenges. Thisstudyalsosupportspreviousresearchfindingsin thatitdemonstratedthevalueofinvolvingsignificantothers in identifying and planning client goals and increasing understandingoftheclient’scontextandproblems(Kuipers et al., 2004). A notable finding of this study was that it identified common perspectives across the three groups, exclusivetotherapistsandSOsandtoparticipantswithTBI andSOs,butitidentifiednoperspectivescommontothera-­ pistsandparticipantswithTBIalone.Thisfindingperhaps highlights the importance of SOs as mediators between therapistsandclientsintheprocessofgoalplanningand rehabilitation.Thisfindingisespeciallyrelevantinacom-­ munitycontext,wheregoalsettingandrehabilitationincreas-­ inglyinvolvethefamily(Seigert&Taylor,2004). Theidentificationofgoalsastoolstoincreasemotivation wasanotherfindingthatsupportspreviousresearch(Gauggel &Hoop,2004).Positiveandregularfeedbackaboutcon-­ crete,task-­specificperformanceandprogressonmeaningful goalswasseenasamotivatorforparticipantstostrive,take onfuturechallenges,andsetnewgoals.Thefindingsalso supportpreviousresearchhighlightingthatseverememory impairmentcanbeabarriertogoalsetting(Kuipersetal., 2004).However,atherapistinthecurrentstudywasableto usegoalstorefocusandguideaclientwithseverememory impairmentastothepurposeofthetherapysessions.

Limitations and Future Research

Thegeneralizabilityofthefindingsmaybelimitedbecause thesamplesizewassmall;itinvolvedparticipantsfromone site;andtheparticipantswereinvolvedinaspecific,short-­ termoccupationaltherapyprogram.However,astrengthof the study is the contribution of multiple perspectives in exploringgoal-­directedrehabilitationinthecommunityset-­ tingforpeoplewithTBI.Moreover,simultaneouswiththeir researchintervention,participantswerealsoundergoinga dayhospitalrehabilitationprogram,whichdidnotofferthe samestructured,goal-­planningprocessbutmayhaveinflu-­ encedtheirviews.Duringtheirinterview,participantsand SOs had the opportunity to compare and contrast their experiences.Althoughthefindingsweregenerallypromising aboutthevalueofgoal-­directedtherapywithpeoplewith

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TBIrecentlydischargedfromthehospital,furtherresearch isneededtoestablishitsefficacywiththisclientgroupat variousstagesofrehabilitation.Particularattentiontopeople withimpairedself-­awarenessiswarrantedtoexaminethe effectsoftherapistfeedbackandexperiencesoffamiliartask performanceinfamiliarenvironmentsonaperson’sability tosetrealisticgoals.

Conclusion

Inthisstudy,whichlargelyconsistedofpeoplewithsevere TBIandmoderatetosevereimpairmentinself-­awareness, 10of12patientswereabletoidentifytheirowngoalsusing theCOPM,andgoalownershipwasacommonlyidentified themeintheinterviews.Theuseofparticipants’goalsto direct the content of the occupational therapy programs resulted in overall satisfaction with progress on goals. Although intrinsic factors, including poor motivation, impaired self-­awareness, and cognitive impairment, were recognized as barriers to client-­centered goal setting for peoplewithTBI,weconcludedthatgoalscanbeavaluable tool in rehabilitation by providing structure to overcome someofthosedifficulties.Thestudyhighlightsthevalueof atherapist-­facilitated,structuredgoal-­planningprocess.SOs areimportantmediatorsbetweenclientsandtherapiststo enhancetheprocessofgoalplanningandrehabilitationina communityrehabilitationcontext. s

Acknowledgments

Wethanktheparticipants,theirsignificantothers,andther-­ apistsfortheirparticipation.WewishtothankthePrincess AlexandraHospitalFoundationandtheQueenslandHealth CommunityRehabilitationResearchSchemeforproviding fundingtoundertakethisstudy.EmmahDoigwasinreceipt of a University of Queensland Postgraduate Scholarship whileconductingthisresearch.

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