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EqualandInclusiveUser
Involvement
inthe
MentalHealthServicesinIreland:
ResultsfromParticipatoryActionResearch
August2006
ShariMcDaid,EqualityStudiesCentre,
SchoolofSocialJustice,UniversityCollegeDublin
incollaborationwith
theSchizophreniaIreland‘Participatingon
Committees’researchgroup
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Acknowledgements
ThisresearchwascarriedoutwiththesupportofSchizophreniaIrelandas
partofitsprogrammeofactivitiesfor2004-2006. Theauthorgratefully
acknowledgesthesupportofthestaffofSchizophreniaIrelandinfacilitating
themeetingsoftheresearchgroup.
IwouldalsoliketothankmyPh.D.Supervisor,KathleenLynch,Chair,
EqualityStudiesCentre,UniversityCollegeDublin,forherguidance.
Iwouldliketothankmyhusband,EdmundMcDaid,forhisdaily
encouragement.
Finally,IwouldliketothankthemembersoftheParticipatingonCommittees
researchgroup,pilotintervieweesandleadersintheserviceusercommunity
whofreelygavetheirtimeandthoughtfulcontributionstothedevelopmentof
thisreport.
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TableofContents
ExecutiveSummary...................................................................................................4
1.Introduction............................................................................................................9
2.TheIrishContextforUserInvolvement................................................................11
3. EqualandInclusiveUserInvolvement:AnEqualityofConditionFramework.....14
4.Methodology........................................................................................................19
5.BarrierstoEqualandInclusiveInvolvement........................................................21
6.TheExperienceofEmpoweringInvolvement.......................................................41
7.DefininganEthicalFrameworkforUserInvolvement:ServiceUsers’
RecommendationsforSupportsandStructurestoAssistEqualInvolvement.........51
8.Conclusion...........................................................................................................58
References...............................................................................................................59
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
ExecutiveSummary
Userinvolvementisnotalwaysameansofempowerment. Itisalsoaprocess
whichcandisempowermentalhealthserviceusers(Croft&Beresford1995).
If,asisrecommendedinIreland’snewpolicydocumentAVisionforChange
(DepartmentofHealthandChildren2006),userinvolvementistobeextendedto
alllevelsofthementalhealthservices,andifitistogobeyondtheexceptional
few,itisnecessarytoputinplaceaframeworkforequalandinclusive
involvement.
Serviceuserswanttoparticipateindecision-makingonhowthementalhealth
servicesarerunandtheyfeelcapableofparticipating:
“Ithinkthattheyshouldwakeupandseethatthereareserviceusersall
overthiscountrywhoarequitecapableofsittingoncommittees,quite
capableofeffectingchange,andthisfearthathealthcareprofessionals
haveIthinkneedstobereallyseriouslychallenged.”
(maleleaderaged40)
1
However,theyfacearangeofdisadvantagesrelativetotheprofessionalson
planningcommittees,includingunequalaccesstoeconomic,social,cultural,and
physicalandmentalresources,lackofauthorityoverdecision-making,deficitsof
knowledgeandskills,lackofrespectandrecognitionbothinIrishsocietyand
withinthementalhealthservices,andtheneedforemotionalsupport.
TheIrishContextforUserInvolvement
Mentalhealthserviceuserinvolvementisarelativelynewphenomenoninthe
RepublicofIrelandcomparedtoitscloseneighbours,NorthernIreland,England,
ScotlandandWales.AVisionforChangerecommendsuser(andcarer)
involvementateverylevelofthementalhealthservices(DepartmentofHealth
andChildren2006,p.24)andinitiativestodevelopuser-runservices,education
programmestoenableserviceuserstorepresentthemselvesandothers,and
establishmentofaNationalServiceUserExecutive(Ibid.,p.26-27).
Implementationofuserinvolvementneedstotakeaccountofthehistoryof
psychiatricpowerinIrishsociety.ArecentdiscussionpaperbytheMentalHealth
Commissionconfirmsthatahierarchicalorganisationofthementalhealth
servicescontinuestoday(MHC2005). AVisionforChangecontinuestoassign
bothclinicalresponsibilityand‘vision’topsychiatrists. Withinthiscontext,there
isadangeroftokenismforuserinvolvementinIreland.
1
Throughoutthedocument,“leader”referstoaserviceuserleaderinIreland,“participant”refers
toaparticipantintheparticipatoryactionresearchgroup,“pilotinterviewee”meansaserviceuser
whotookpartinapilotinterviewbutdidnotparticipateintheresearchgroup. Respondenttext
appearsinitalics;researchertextappearsinnormalfont.
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
EqualandInclusiveUserInvolvement:AnEqualityofConditionFramework
Issuesofempowermentareattheheartofequalinvolvementforpeoplewith
experienceofthementalhealthservices. Serviceuserdefinitionsof
empowermentshowthatforthem,empowermentisindivisiblylinkedtoincreased
authorityoverdecision-making. An‘EqualityofCondition’frameworkcanhelpto
explainpowerinequalitythroughasetofrelateddimensionsofinequality:cultural
resources,economicandtimeresources,physicalandmentalresources,respect
andrecognition,andlove,careandsolidarity. ‘EqualityofCondition’refersto
“enablingandempoweringpeopletoexercisewhatmightbecalledrealchoices
amongrealoptions,”and“roughlyequalenablingofeachpersontoinfluencethe
decisionsthataffecttheirlives”(Baker,etal.2004,p.34). Researchshowsthat
peoplewithadiagnosisofmentalillnessexperienceinequalityalongallsix
dimensions.
Methodology
Thisresearchhasbeenconductedusingparticipatoryactionresearch
methodology. Asaqualitativemethodologysimilartoethnography,itdoesnot
claimtorepresenttheviewsofallserviceusers. However,itdoesauthentically
evidencearangeofexperiencesofuserinvolvement. Italsocoversviewsfrom
differentregions,differentagesandbothmenandwomen,aswellastheviews
ofpeoplewithdifferentlevelsofeducation. Atotalof16serviceuserswere
interviewed,ofwhom13participatedinapilottrainingprogramme. Themajority
ofparticipantshadadiagnosisofschizophreniaorarelatedpsychoticdisorder,
andalloftheparticipantshadlong-termengagementwiththementalhealth
services. Inaddition,theseinterviewsweretriangulatedwithfiveinterviewswith
serviceuserleadersinIreland. Theresearchwascarriedoutinfivephases:pilot
interviews,introductoryworkshop,pilottrainingprogramme(theactionelement),
analysis,andtriangulation.
BarrierstoEqualandInclusiveInvolvement
Inequalityduetolackofcultural,physical,mental,timeandeconomic
resources
Participantsidentifiedarangeofculturalbarrierstoinvolvement. These
included:

difficultieswithcontext-specificlanguageandterminology

lackofknowledgeofthesubjectmatterorpolicyhistory

lackofvaluingofserviceusers’experientialknowledge

notknowingcommitteerulesandprocedures

notknowingthehidden‘rulesofthegame’
Participantsdescribedhowthephysicalandmentalimpactoftheircondition
couldhindertheirinvolvement:
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62

difficultieswithconcentration

lackofmotivation

lackofenergyandstamina
Alargenumberofparticipantsreferredtoanxietyorstressaspartofthe
involvementexperience. Serviceusersdescribedsituationsofisolationwhileon
committees. Participantsalsoidentifiedtheirinequalityintermsoftime
resourcesandeconomicresources.
InequalityduetoPrejudice/Stigma
Sevenparticipants,fourleadersandonepilotintervieweeraisedstigmaasan
issueduringtheirinterview. Thenegativepublicattitudesexperiencedby
participantsledanumberofthemtobecautiousaboutparticipatinginpublic
advocacy.
Thedifficultyaboutspeakinginpublicputspeoplewithadiagnosisofmental
illnessataprofounddisadvantageineffectingtheirdesiredsocialchange.
Mentalhealthorganisationshaveadutytoensurethattheydonotcontributeto
theghettoisationofserviceuserswithinmentalhealthservices. Thisrequires
supportingserviceuserstoachievetheirwidersocialjusticegoals,including
prioritisingcombatingsocialstigmaandchangingpublicattitudes. Italsomeans
ensuringthatpeoplewithmentalhealthdifficultiesaretreatedwithrespectwithin
thementalhealthservices.
UnequalPowerinCommittees
Participantshadexperienceddifficultieswithgettingtheirissuesofconcernonto
theagenda,withmedicalprofessionals’interestsdominatingthediscussion,and
withsimplybeingoutnumberedoncommittees.
“Thefirstproblemisthenumbersgame,youknow,Ihaveplentyof
confidenceandplentyofknowledgearoundserviceuserissues,butIfind
myselfonadvisorygroupswherewehave,forexample,fourconsultant
psychiatrists,oneserviceuser,onepersonfromtheHSE,oneperson
fromtheDepartmentmaybe. There’saclearimbalanceinfavourofthe
psychiatricprofessionatthemomentwithmentalhealthissues…The
impactisthat,forpeoplewhoneedtolearnabitmoreaboutthemselves
even,andperhapshowtoparticipate,it’sverydifficultforthemunless
theyalreadyhavethekindofconfidencethatreallytheyneedtobuild.”
(Maleleader,aged52)
TheExperienceofEmpoweringInvolvement
Manyparticipantsdescribedpositiveexperiencesfrombeinginvolvedin
collectiveadvocacy. Serviceusersdescribed:

affirmationoftheirowncompetencies

feelingrespectedasanequal
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EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62

helpingothers

havinganimpact
Havingprioreducation,havingpreviousexperienceasaprofessional,andbeing
adeterminedpersonwereidentifiedasfactorsinfluencingtheirabilitytobe
involved.
Thosewithexperienceofinvolvementemphasisedthevalueofsupportfor
initiallyencouragingandsustainingtheirinvolvement. Thisincludedfamily
support,peersupportandthesupportofmedicalandotherprofessionalallies.
DefininganEthicalFrameworkforUserInvolvement:Serviceusers’
recommendationsforsupportsandenablingstructures
Serviceusersrecommendedthefollowingstructuresandsupportstoassisttheir
involvement:

Traininginhowcommitteesoperate,howtoreadandanalysepolicy
documents,howtogatherevidence,howtonegotiate,howtousethe
internettosearchforinformation,howtowriteeffectivelyandhowtoavoid
burn-out

Clarifyingtechnicallanguageduringthemeetingandprovidingaglossary
ofterms

Providingaccessible,summarisedinformation

Providingenoughbackgroundinformationtobeabletoparticipate

Providingcleartermsofreferenceforthecommittee

Designatingtimeduringthemeetingsforserviceuserinput

Flexibility,includingbreaksduringmeetings,alternate/substitute
committeerepresentativesandtheabilityto‘takeabreak’fromthe
committee

Respectingandlisteningtoserviceusers’views

Negotiatingfairpaymentforparticipation

Valuingparticipants’time

Puttingserviceusersinapositionofauthorityonthecommittee

Providinganopportunitytoframetheagenda

Ensuringproportionalmembershipofthecommitteebetweenservice
usersandprofessionals

Providingmentorsandaccesstopeergroupsupport

Supportingfamiliestoencourageuserinvolvement

Supportingcapacitybuildingofpeersupport

Encouragingandrecognisingallysupport

Addressingprejudiceandstigma
Inaddition,serviceusersgoingforwardtoparticipatehavearighttobeprotected
fromphysicalandmentalharmasaresultoftheirinvolvement. Professionals
conductingresearchhavelongrecognisedtheneedtooperatewithinagreed
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
ethicalstandardsinordertoensurethattheirresearchdoesnotcauseharmto
researchparticipants. Yettheissueofethicsisrarelyraisedwithregardto
organisationsinvitingserviceuserstoparticipateindecision-making. Service
usersinthisresearchclearlyarticulatedexperiencesofstresswhileparticipating
oncommittees. Thisdemonstratestheneedtodevelopanethicalframeworkfor
userinvolvementwhichwouldsetoutminimumstandardstopreventharm.
“Whentheyinviteserviceuserstothetable,theyneedtogivethem
supportandtraining. ButIthinktherearemanyserviceuserssitting
aroundthetablewithoutbeinggivensupportandtraining.”
(Femalepilotinterviewee,aged60)
Conclusion
TheappointmentofaserviceuserontotheAreaManagementTeamofevery
localarea,theestablishmentofanationalServiceUserExecutiveandthe
presenceofserviceusersontheMentalHealthCommissionareprofoundsteps
towardgreaterequalityinthementalhealthservices. Butserviceusers’
experiencestellusthatasimpleequalityofpresence(therighttobepresentin
decision-makingforums)willnotensureequalparticipation. Thisresearch
revealedpracticesoftokenism,disrespect,lackofinfluence,constrainton
speakinginpublic,ineffectualness,isolationandstressexperiencedbyusersin
theprocessofinvolvement. Inorderformentalhealthservicestoeffectivelyand
moreequallyinvolveserviceusersinplanningandmanagingthementalhealth
services,aradicalshiftinapproachisneeded. Serviceusersrequiresupports,
accommodationsandre-balancedstructurestoenabletheirfullinvolvement.
Establishingan‘ethicalframeworkforuserinvolvement’ismorelikelytopromote
notonlythepresenceofserviceusersinplanningandmanagementstructures,
buttheirempowermentwithinthementalhealthservicesandinIrishsociety.
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
1.Introduction
Userinvolvementisnotalwaysameansofempowerment. Itisalsoaprocess
whichcandisempowermentalhealthserviceusers(Croft&Beresford1995).
If,asisrecommendedinIreland’snewpolicydocumentAVisionforChange
(DepartmentofHealthandChildren2006),userinvolvementistobeextendedto
alllevelsofthementalhealthservices,andifitistogobeyondtheexceptional
few,itisnecessarytoputinplaceaframeworkforequalandinclusive
involvement.
Forpeoplewithexperienceofmentaldistress
2
whoenterintotheplanningor
advisorycommitteesituation,theexperiencecanbedauntingandintimidating.
Serviceusersfacedwithagroupofprofessionalscanfindthemselvesignored,
sidelinedorbelittled. Theymaybemadetofeelthattheyareignorantin
comparisonwithwell-educatedprofessionalsorthattheirknowledgewhichis
basedonexperienceislessvalidthanprofessionalknowledge. Theymayfeel
lostinasituationwheretheydonotunderstandthelanguage,thesubjectmatter
orthehistory. Theymayfindthemselvesineffectualinaprocessinwhichthe
rulesandproceduresortheorganisation’sdecision-makingstructurearenot
explained. Theymayfeelfrustratedatnotbeingabletoputtheirissuesontothe
agendaornotbeingabletogetserviceuserissuestakenseriously. These
experiencescancombinetodisempowerserviceusersoncommittees.
Serviceuserswanttoparticipateindecision-makingonhowthementalhealth
servicesarerunandtheyfeelcapableofparticipating:
“Ithinkthattheyshouldwakeupandseethatthereareserviceusersall
overthiscountrywhoarequitecapableofsittingoncommittees,quite
capableofeffectingchange,andthisfearthathealthcareprofessionals
haveIthinkneedstobereallyseriouslychallenged.”
(Maleleader,aged40)
3
“Well,Ijustthinkthatmaybeifmorepeoplewereofferedanopening,if
morepeoplehadavoice,wemightbeheard.”
(Femaleparticipant,aged52)
2
Thispaperwillusethetermsserviceuser,personwithexperienceofmentalhealthservices,
personwithexperienceofmentaldistressandpersonwithadiagnosisofmentalillness
interchangeably. Thedesignationofthissocialgroupiscontested,withdifferentopinionsonthe
appropriateterminologyexpressedwithintheresearchgroup. Theauthorhasfeltthatamixture
ofterminologieswouldbestreflectthisdiversity. Thetermserviceuserappearsmoreoftenonly
forthesakeofbrevity. Serviceuserinthiscontextdoesnotrefertorelativesascarers.
3
Throughoutthedocument,“leader”referstoaserviceuserleaderinIreland,“participant”refers
toaparticipantintheparticipatoryactionresearchgroup,“pilotinterviewee”meansaserviceuser
whotookpartinapilotinterviewbutdidnotparticipateintheresearchgroup. Respondenttext
appearsinitalics;researchertextappearsinnormalfont.
EqualandInclusiveUserInvolvementintheMentalHealthServicesinIreland
Page62
However,theyfacearangeofdisadvantagesrelativetotheprofessionalson
planningcommittees,includingunequalaccesstoeconomic,social,cultural,and
physicalandmentalresources,lackofauthorityoverdecision-making,deficitsof
knowledgeandskills,lackofrespectandrecognitionbothinIrishsocietyand
withinthementalhealthservices,andtheneedforemotionalsupport.
ThispaperreportsresultsfromaParticipatoryActionResearch(PAR)project
withlong-termmentalhealthserviceusersinIrelandtoexploretheirviewson
userinvolvementinplanningand/oradvisorycommittees. Theresearchis
uniqueinIrelandinexamininguserinvolvementincommitteesfromtheirown
perspective. Theresultsshowthatwhileinvolvementcanbeanempowering
experience,therearealsosystemicrisksofdisempowermentofserviceusersin
involvement. Inordertoenablemoreequalinvolvement,aframeworkof
structures,accommodationsandsupportsneedstobedevelopedtoaddress
theirunequalposition.Inaddition,organisationsinvitingusersontocommittees
havearesponsibilitytoprotectserviceusersfromharmduringtheinvolvement
process. Isuggestbelowthatthereisaneedforan‘ethicsofparticipation’
which,similartoethicalstandardsinresearch,woulddefineanorganisation’s
responsibilitiestowardstheserviceusersitinvitesintoongoinginvolvement.
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