Hospicein Australia _____________________

The role of occupational therapy groups in anAustralian hospice

Sky Dawson

Abstract

Thehospicephilosophyplaysanim-portant role in the deliveryofhealthservicesthat focuson the biopsycho-logicalneedsofpeoplewith a terminalillnessand theirenvironment.Occupa-tional therapyin hospicecanprovidean environmentwhich will enablepeopletodiscoverand respondto theirown inner needs. The occupationaltherapysettingcreatesanenvironmentwhichprovidespeoplewith theoppor-tunityto carryoutactivitieswhichtheyare interestedin, to socialize withothers, and to experiencethe philo-sophyofhospice.Thepurposeofthisstudywastoexaminetherole ofgroupswith occupationaltherapyin hospice.A literaturesearch,participantobser-vation, interviewsanddiscussionindi-catethat music,massage,and beautytreatmentare importantaspectsofcarefor thedyingperson.

Sky Dawsonis a lecturer at the Schoolof 07Curtin University,WesternAustralia.

The role of hospice

ThehospicemovementdevelopedinAustraliaas a new and innovativeap-proachto thedelivery of carefor thosewitha terminalillness.It was viewedasamovementawayfrom the technologi-cal andscientific approachof modemmedicinewith itsgoalofcureatall costs.Theliteratureemphasizesthat hospiceischaracterizedby:

• Carefor the individual ratherthantreatmentof thedisease.

• Palliativeratherthan curativemeasures.

• Painmanagementandsymp-tomcontrolashigh priorities.

• Equality betweenthe patientandfamily andthehealthcareprofessionals.

• Concernfor interpersonal,ov-er technical,aspectsof medi-calcare.13

Thehospicemovementhaschangedthe conceptof carefor thosewho aredyingof a terminalillness,bysupport-ing the ideaof stayingat home,andprovidingsupport,pain management,anddignity to die peacefully.Theem-phasisin hospiceis to meettheneedsof thewholeperson.

The role oftheoccupationaltherapistin hospicecare

Occupationaltherapistsare oftenemployedaspart of the hospiceteamworking with home care, in the in-patientsetting,and/orwith clientswhoattenda day hospiceprogram.4-6Theoccupationaltherapistin hospicecareassistseachindividual to attaintheoc-cupationalroles that areperceivedbytheindividual andthecaregiversto beimportant,giventhelimitationsof timeandphysicalability.

Occupationaltherapistsseeclientsin-dividuallyor in groups,in thehospiceorin their ownhomes.In an inpatientset-ting, the occupationaltherapy de-

TheAmericanJournalof Hospice& PalliativeCareJuly/August1993

Introduction

13

partmentis often where many clientsspenda largepart of their day.Theuseof groups may be a major focus ofoccupationaltherapy.Groupscanpro-vide an ideal environmentfor thetherapist to enhanceinteracting,shar-ing, caring, remembering,and to de-creasefeelings of helplessnessandisolation.

Little hasbeenwritten in thelitera-ture about the role of occupationaltherapy groups in hospice. MichaelPizzi addressestheroleof occupationaltherapygroupsin hospicewith AIDSpatientsby what he calls, “beginningthe conversation.”7He suggeststhatoccupationaltherapistsfocus not onpathology but on positivity, produc-tivity, ability andweilness,“within thevaluesystemandon the occupationalchoicesof humanbeings.”7To workinthis field requiresa move away fromthe traditionalmedicalmodel.Occupa-tional therapistsmustbe ableto assistpeopletomakethemajorlife transitionfrom theoccupationalrolesof living totheroleof apersonreceivingpalliativecare.The occupationaltherapygroupsettingprovidesanopportunityto cre-ate a social support systemto assistpeopletoadjustandadaptto thechang-ing roles.

The purposeof this study was toexplore the useof groupsin occupa-tional therapyin ahospicesetting.Thegoalswere:

1) to gain an understandingoftheuseof occupationaltherapygroupsin hospice,

2) todescribeanddocumentdif-ferentgroupsobservedinanoc-cupationaltherapydepartment,

3) to describeanddocumentthevalueof groupsas perceivedbytheparticipants,

4) to makerecommendationsforimproving occupationaltherapygroupsinhospicesituations.

Methodology

Researchdesign

A qualitativestudywasconductedusingan ethnographicapproach.Eth-nographyis defined as a processwhereby the researcherattemptstogainacomprehensiveunderstandingofahumangroupor subculture.8Ethnog-raphy field methodsincludedpar-ticipant observation,informal andsemi-structuredinterviews and litera-turereviews.

Subjects

The subjectswere inpatientsanddayclientswho attendedoccupationaltherapyone payper week at ametro-politan hospice. They were a “con-veniencesample.”9Conveniencesam-plesconsistof participantswho arety-picalof thetargetpopulationsandwhoareeasily accessiblebutarenot statis-tically projectableto theentirepopula-tion being studied. Oneday-hospice-client was interviewedweekly at onestageof thestudyfor a casestudy, andconsentwas formally obtainedfromhim andfrom thehospicepersonnel.

Procedure

The ethnographicstudyof occupa-tional therapy group work was con-ductedover five months using par-ticipant observation, informal andsemi-structuredinterviewsanddiscus-sionwithstaffandpatientsat ahospicein Australia. This is a freestandinghospicewith 26beds.Thereis oneoc-cupationaltherapistand one occupa-

tionaltherapyassistant,eachemployedthirty hoursperweek. At thehospice,therearea varietyof groupswhich areorganizedby the occupationaltherap-ists.Theresearcherhadno inputto theprogram,and simply observedwhat-ever hadbeenorganizedfor that day.Eachof the groups usually involvedbetweenfour and 10 of the hospiceparticipants.

Observationsweremadeof morn-ing groups,usingparticipantobserva-tion techniques.Denzin’°explainsthevalueof participantobservation:

“It simultaneouslycombinesdocumentanalysis,interview-ing of respondentsand inform-ants,directparticipationandob-servation,andintrospection.”

Informal interviews were con-ductedwith five participants.Onepar-ticipantwasinterviewedusinga semi-structuredinterview format, andtheseinterviews were transcribedandanalyzed.

Data analysis

Observationswerebrieflyrecorded.Thematerialwasexaminedfor themesor ideas.Contentanalysis8is usefulforstudyingqualitativedatabecause:

• It canbe used with unstruc-tured material such as diarynotes of participantobserva-tions,andsemi-structuredin-terviews.

• It is sensitiveto thecontextinwhich the study occurs.Theresults of this analysiswerecheckedwith findings fromtheliterature.

As the researcherwasa participantandnotmerelyanobserver,sheneededtorecordherownthoughtsandfeeling,andnoteanybiasesthatmay havebeenpresent.Onebiasthatwasimportanttorecognizewasthat theresearcheris anoccupationaltherapistand this may

The AmericanJournalof Hospice& PalliativeCareJuly/August1993

Groups in hospice

Little hasbeenwritten inthe literature abouttherole ofoccupationaltherapygroupsin

hospice.

14

haveinfluencedherperceptionsof thegroups.A diary waskept and the re-searcherrecordedthoughtsand feel-ingsaswell asintuitive ideasthatarosefrom the data. Thesewere discussedwith peersanda field work supervisorandincorporatedinto thefinal analysis.

Results

Through weekly observationsandinterviewstheresearcherdevelopedanunderstandingof particulargroups inoccupationaltherapy by sharing in-timatelythelife andtheactivitiesof thepeopleinvolved. This included thedeathof someof the participantsandtheassociatedgrieving.As Patton’1ex-plains, “the evaluator not only seeswhatis happeningbutfeelswhat it islike to bepartof theprogram.”

Many different groups were ob-served.Somewereunstructuredorhada simpleactivity basethat resultedinsocial sharing.Thesegroup situationsallowedsomecommunication,choice,and leisure. Otherswere morestruc-tured and were usually organizedarounda themeor activity. All groupswereopenand involved whoeverfeltwell enoughor motivated enough toattend.This is an importantconsidera-tion when working in a hospice.Groupsincluded music, beautytreat-ment,socialoutings,picnics,massage,exercises,craft activities,andthecele-brationof popularfestivals.

It was notedthat by thetime manypeople are admitted to hospice, theremaybelittle thattheycanactuallydo orparticipatein. Music canalwaysbeused,andit remainsaccessiblethroughoutthediseaseprocess.Themusicflows downthecorridorssothatthosepatientswhocannotgointotheoccupationaltherapydepartmentcanstill sharein themusic.Therewereseveralvisiting musicians,and tapeswerealsoplayedfor relaxa-tion, stimulation,communication,andpainrelief.

One manwho attendedthe day-hospicehad a strong voice and had

sungprofessionallyasa youth. At thetime of the study, he hadonly limitedvision andwasunableto reador par-ticipate in many activities. He ex-periencedgreatjoy whenhewasableto singhis favoritesongsandsharehislove of singing in thegroups.He ex-

Through weeklyobservationsand

interviews,the researcherdevelopedan

understandingofparticular groupsin

occupationaltherapy

plained that he loves to come to oc-cupationaltherapyto be part of thegroups, “just to be with otherswhounderstandwhat you are goingthrough.You’re not treatedas a leperas you arein generalsociety.”

Music therapywasobservedto beastimulusfor revivingmemoriesandfeel-ings. It wasobservedthatmusic pro-videsa non-threateninggroupexperi-ence.Peoplewould sometimeschoosemusic that reflectedthefeelings theywantedto get in touch with. RuthBright12describeshow “music from aparticularphaseof one’s life takesonebackveryvividly tothattime, andit canbeof greatassistanceto making a lifereview.” As peoplerecall thesetimes,they rememberfriendships,happyorpainful situations,andfeelingssurfaceeasily.

Beauty therapy was observedasanotherexampleof a group activity.Traditionallyit hasbeenseenas a timeof relaxation and sharing.Hawksdescribeshow “the lossof anability tocopewith their (thepatients)own per-sonalhygieneandgroomingis adevas-tating aspectof terminal illness.”3Aswell as the assessmentof a patient’scompetencewith self-care,the provi-sion of aids or equipment,and the

teachingof techniquesto maintainen-ergy and independence,thereis thesensitive issue of beauty therapy.“Well-groomedhair, facials,manicureandpedicure,the selectionof a wig,massage,encouragementto getdressedeverydaycanbeverytherapeutic.”3

Thefacial cosmeticsgroupwasob-servedtobeahighly socialaspectofcarefor the women. All the womeninter-viewedlisted thebeautytreatmentsasthemostpopularaspectof occupation-al therapy.Theystatedthathavingtheirhair done,their nails manicuredandafootmassagewerethemostwonderful-ly energizingactivities.Thereare im-portantpositiveeffectsfrom applyingeye make-upand eyebrowcolor thatcan move attention away from hairloss.Oftenpatientsareunabletogo outthemselvesto attend to their beautyneeds.Thewomenwereabletoorganizewiththeoccupationaltherapistto ring thehairdresserandmakeanappointmentforhertocometothehospice.Thisprovidedasenseof controloverone’slife andtheability to fulfill aneedthatmostwomentakefor granted.

A deeperside to thebeautygroupsis the use of touch. This was oftenintroducedin beautysessionsand thenfurtherexploredthroughmassage.Formany patientsthereis little physicalcontactother than with nursing care.Yet, touchandsexualityareimportantissuesfor most peopleregardlessoftheir stateof health. In our generallyno-touchsociety,massagemay be theonly way that peoplecan show in-timacy, andgive and receivesensualpleasure.Theresearcherparticipatedinseveralmassagesessionsandfoundthedepthof sharingto beenlightening.

While having her feet massaged,onewomanbeganto discussherillnessandherinterestinalternativetherapies.Sheexplainedthatsomehadhelpedherthroughoutthecourseoftheillnessandsomehadbeenbeneficialin the earlystages.Shewasstill continuingtoprac-tice meditationandrelaxationthrough

TheAmericanJournalof Hospice& PalliativeCareJuly/August1993

15

music.Sheneededamassagedaily, forthecontact,for therelaxation,and forthereleaseof tensioninparticularareaswhichwereverypainful.

Anotheraspectof thesegroupswasthecommunicationthatdeveloped.Is-suessuchas hair lossor dry skin canleadto the sharingof fears,feelings,and frustrationsregardingthe cancer,its treatmentandprognosis.Theseis-suesappearedtobeofgreatimportanceparticularlyforthosewomenwhowerein hospicefor respitecareor symptomcontrol.

The main themesthat were men-tionedby theparticipantsweretheneedto socialize,theneedto beacceptedbyothers,thedesireto havesomecontrolovertheirlivesandthepositiveaspectsof sharingandremembering.Oneman,when discussingthe occupationaltherapygroupsandday-hospicestated,“I loveit, absolutelylove it . . .youmeetpeoplethat understandwhat you aregoingthroughandwhatyou aresuffer-ing from.” It wasfoundthatgroupscanprovideanenvironmentfortheoccupa-tional therapistto enhanceinteraction,sharing,caring, rememberingand,thus,decreasefeelingsof helplessnessandisolation.

Discussion

Throughobservationandparticipa-tion in the groups,it becameapparentthattheoccupationaltherapygroupen-vironment reachesout beyond thedepartment.Thegroupisopento thosepatientswho wishto comeas well asfamily and friends and staff. Family,friends,andvolunteersareinvolved inthedaily activitieswhich areconstantlyhappeningin occupationaltherapy.

Volunteersplayamajorroleandthisreinforcesinvolvementfrom thecom-munity, developing social networksand support systems.The statementsthat peoplemade when interviewedreinforcedtheneedforempathiccaringsaying that it waswonderful to comeandbewithotherswhounderstoodand

whocared.Justtobein thehospiceandthe occupationaltherapydepartment,patientsfelt safeandsecure,withoutexpectations.Eachpersonmentionedaneedto socializeandto bein a secureandacceptingenvironment.

It was only afterfivemonthsofparticipationthat theresearcherwas

able to appreciatethefullmeaningofthegroups

It wasonly afterfive monthsof par-ticipation that the researcherwasableto appreciatethe full meaningof thegroups andwas beginningto experi-encethemastheparticipantsdid. Agar8

suggeststhat it takes at least threemonthsfor anethnographicresearchertobeacceptedby thecommunity.Onewomanwasnotclearwhattheresear-chermeantwhenaskingher aboutthegroups.To her, occupationaltherapywasamajorpartof herday,andsotherewas no separate,structuredgroup assuch.The occupationaltherapygroupwasa mainpartof herwakinglife.

Thestudysuggeststhatoccupation-al therapycanprovidea safeandsup-portive group environmentwhich as-sistspeopleto developthesocial sup-port necessaryto facetheirfuture,andto beableto copecreativelywith theirpain andapprehension.From observa-tions, it appearsthat occupationalther-apy groupscanhelp clients dealwithfeelings as well as developpracticalskills toward maintaininga degreeofindependence.

Tigges,Sherman,andSherwin’4ex-plainthatbeingdeniedtheopportunityto engagein occupationalroles de-privesa personof thebenefitof beinga contributingmemberof societyand,thus, createsa senseof isolationandalienation.The major difficulties feltby thepersonwithprogressivecancerhavebeen identified by Tigges and

Marcil6 as helplessness,hopelessness,and uselessness.Thesedifficultiesresultin the lossof quality of life as-sociatedwith loss of control, loss ofchoices,andlossofoptions.Theabilitytodevelopasenseof controloverone’slife, to havechoicesandoptions,wereobservedby the researcherto be ofgreat importance.One man in thegroupstatedthat it is important,“to bewith peoplewho understandmy prob-lem andwhotreatmeas anequal.”

Howe& Shwartzberg’5list severalaspectsof groups in occupationaltherapy that emphasizethe issuesraisedin this study:

1) Groupssupport growth andchange.2) Groupscanprovidefeedbackandsupport.

3) Groupscansatisfyindividualneedsandsocialdemands.

4) Groupsneedto haveacom-mon goalanddynamicinterac-tionbetweenmembers.

Conclusion

It is realizedthat the resultsof thisstudycannotbegeneralizedtootherhos-pice situations;however,some of theobservationsmaybeimportantfor otheroccupationaltherapistsworking in thefield. Occupationaltherapy groups inthis settingdid provideclients with anopportunitytoexploreandshareoptionsandchoicesanddidhelpdevelopasenseof control regardingissuessuchaspar-ticipation,abilities,andactivities.Thus,clientswereableto havetheopportunityto reconnectwith activities that gavemeaningto their lives.

It was evident that occupationaltherapistsworkinginhospicealsoneedto be ableto redefinetheir goalsandobjectivesandbe ableto work in theimmediatepresent,without a definitefuture to plan for. Being deniedthechancetoengagein occupationalrolescandepriveapersonof theopportunityto bea contributingmemberof societyandcanresult in feelingsof isolation

TheAmericanJournalof Hospice& PalliativeCareJuly/August1993

andalienation.Occupationaltherapistscanaddressthesedifficulties, as thisstudyhas shown. It appearsthat themosteffectivetherapistis onewhohasanunderstandingof thephilosophyofhospiceandcancreativelydevelopen-vironmentsto encourageoccupationalbehaviorsandsatisfythe occupationalneedsof the individuals to enhancetheir quality of life.U

AcknowledgmentsThe authorwishesto thankthehospiceclients,the occupationaltherapistandthe medicalsu-perintendent,andtheotherstaffandvolunteerswithout whomthis studywould not havebeenpossible.She also wishesto acknowledgethehelpful commentsmade by Dr. Ray James,SeniorResearchFellow, NCRPDA, and Ms.Loretta do Rosarlo,Lecturer, School of OT,Curtin University,WesternAustralia.

References

1.FrancoVW: TheHospice:Humanecareforthedying.JReligionandHealth,1985;24:79-89.2. KastenbaumR: Healthydying: A paradoxquestcontinues.JSocIssues,1979;35:185-206.3. HaysRD, Arnold5: Patientandfamily satis-factionwith careoftheterminally ill. TheHospJ, 1986;2(3):129-150.4. FoltsD,TiggesK, WeismanT: Occupationaltherapyin hospicehomecare:Astudenttutorial.TheAmerJ0ccTherapy,40(9):623-628.5. ThompsonB: Hospicedaycare.The AmerJHospCare,1990;Jan/Feb:28-31.6. TiggesKN, Marcil WM: Terminalandlife-threateningillness: An occupationalbehaviorperspective.NewJersey,SlackInc., 1988.7. PizziM: The transformationofHIV infectionandAIDS in occupationaltherapy:Beginningthe conversation.Amer J 0cc Therapy, 1990;44(3):199-203.8. AgarMH: The professionalstranger:An in-fornial introduction to ethnography.Orlando,FL, AcademicPress,1980.

9. GreenLW, Lewis,FM: Measurementandeval-uation in healtheducationandhealthpromotion.Palo Alto, CA, Mayfield PublishingCo., 1986.10. Denzin NK: The researchact. New York,McGraw-Hill, 1978.11. PattonMQ: Qualitativeevaluationmethods,Beverly Hill, CA, SagePublications,1980.12. BrightR: Grieving:Ahandbookforthosewhocare.StLouis, MO,MMB Music Inc. 1986.13. HawksPE: The role of the occupationaltherapistin thecareoftheterminallyill andtheirfamilies.PaperdeliveredatWestAustralianOTConference,1989.14.TiggesK, ShermanL, Sherwin,F:Perspec-tiveson thepainofthehospicepatient:Theroleoftheoccupationaltherapistandphysician.0ccTherapyin HealthCare,1984;1(3):56-68.15.Howe MC, SchwartzbergSL: A functionalapproach to group work in occupationaltherapy.lB LippincottCo., 1986.

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The AmericanJournalof Hospice& PalliativeCareJuly/August1993