RISE manual VERSION 2.0 clean - Mental Health Innovation ... manual...Contact:...

Manualforcommunity-based

rehabilitationworkers

Version2.0

2

RehabilitationInterventionforpeoplewithSchizophreniainEthiopia(RISE):A

manualforcommunity-basedrehabilitationworkers

August2017

Authors:LauraAsher,CharlotteHanlon,JulianEaton,MaryDeSilva,Sudipto

Chatterjee,RahelBirhane,AtalayAlem,VikramPatel,AbebawFekadu

TheRISEmanualwascreatedfollowinganextensiveinterventiondevelopmentprocessin

collaborationbetweentheDepartmentofPsychiatry,CollegeofHealthSciences,Addis

AbabaUniversity,EthiopiaandtheDepartmentofPopulationHealth,LondonSchoolof

HygieneandTropicalMedicine,London,UK.Forfurtherinformationpleasesee:

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0143572.TheRISE

interventionwasevaluatedinaclusterrandomisedtrial(ClinicalTrials.govNCT02160249)

Contact:[email protected]

Acknowledgements:Theauthorswouldliketogratefullyacknowledgeseveralsource

materialsthatwereusedtodeveloptheRISEmanual,including‘TheCOPSIManual:Manual

forWorkingwithPeoplewithSchizophreniaandtheirFamilies’(Sangath,Goa,India

http://www.sangath.in/copsi/);the‘MentalHealthPocketGuideforHealthExtension

Workers’(FederalDemocraticRepublicofEthiopiaMinistryofHealth);‘CommunityBased

RehabilitationGuidelines’(WorldHealthOrganisation);‘Facilitator’sGuideforPsychosocial

RehabilitationSupportGroups’(CarrieBrooke-Sumner,PRIMESouthAfrica),‘MentalHealth

andHumanRightsResourcePack’(AmaudoUK,2007),and‘Wherethereisnopsychiatrist:A

mentalhealthcaremanual’(VikramPatel).

Funding:TheRISEprojectwasfundedbytheWellcomeTrust.TheRISEprojectwaspartof

the PRogramme for Improving Mental health carE (PRIME), which is funded by the UK

DepartmentforInternationalDevelopment.

Thismanualbelongsto:

Telephonenumber:

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Contents

INTRODUCTIONTOTHECBRMANUAL.....................................................................................6

SECTIONA:UNDERSTANDWHATSCHIZOPHRENIAISANDTHEPROBLEMSITCAUSES.............7

1 WHATISMENTALILLNESS?..............................................................................................8

2 WHATISSCHIZOPHRENIA?.............................................................................................13

3 MEDICATIONFORSCHIZOPHRENIA................................................................................18

4 DISABILITIESRELATEDTOSCHIZOPHRENIA.....................................................................21

5 IMPACTOFSCHIZOPHRENIAONTHEFAMILY.................................................................23

6 STIGMAANDDISCRIMINATION......................................................................................26

7 HUMANRIGHTS.............................................................................................................29

8 THEIMPORTANCEOFTHECOMMUNITY.........................................................................31

SECTION B: LEARN HOW TO HELP PEOPLE WITH SCHIZOPHRENIA AND THEIR FAMILIES

THROUGHCBR.......................................................................................................................34

9 OVERVIEWOFCBRDELIVERY.........................................................................................35

10 COMMUNICATIONSKILLSANDPROBLEMSOLVING........................................................50

11 CREATINGATRUSTINGRELATIONSHIP...........................................................................55

12 NEEDSASSESSMENT.......................................................................................................58

13 GOALSETTING................................................................................................................62

14 RISKASSESSMENT..........................................................................................................68

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15 BEINGAWAREOFTHECAREGIVER’SNEEDS...................................................................73

16 MODULE:UNDERSTANDINGSCHIZOPHRENIAANDITSTREATMENT...............................75

17 MODULE:IMPROVINGACCESSTOHEALTHSERVICES.....................................................81

18 MODULE:PREPARINGFORACRISIS...............................................................................85

19 MODULE:DEALINGWITHHUMANRIGHTSPROBLEMS...................................................89

20 MODULE:SUPPORTINGINDIVIDUALSTOTAKETHEIRMEDICATION...............................96

21 MODULE:IMPROVINGPHYSICALHEALTH.....................................................................106

22 MODULE:DEALINGWITHDISTRESSINGSYMPTOMS.....................................................112

23 MODULE:MANAGINGSTRESSANDANGER..................................................................116

24 MODULE:IMPROVINGDAYTODAYFUNCTIONING......................................................122

25 MODULE:IMPROVINGTHEFAMILYENVIRONMENT.....................................................128

26 MODULE:TAKINGPARTINCOMMUNITYLIFE..............................................................134

27 MODULE:GETTINGBACKTOWORK.............................................................................140

28 MODULE:DEALINGWITHSTIGMAANDDISCRIMINATION............................................146

29 MODULE:IMPROVINGLITERACY..................................................................................150

30 MODULE:TAKINGCONTROLOFYOURHEALTH............................................................152

31 COMMUNITYENGAGEMENT........................................................................................158

32 FAMILYSUPPORTGROUPS...........................................................................................167

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SECTIONC:KNOWHOWYOUWILLBESUPPORTEDTODELIVERCBR...................................172

33 CBRWORKERWELLBEING............................................................................................173

34 SUPERVISION...............................................................................................................177

35 DEALINGWITHDIFFICULTSITUATIONS.........................................................................182

36 LINKSTOHEALTHSERVICES..........................................................................................195

37 GOODDOCUMENTATION.............................................................................................198

38 HOWTODEALWITHOTHERPEOPLEWITHPROBLEMS.................................................200

39 SUPPORTINGPEOPLEWITHINTELLECTUALDISABILITYANDSCHIZOPHRENIA...............204

6

IntroductiontotheCBRmanual

Whatiscommunity-basedrehabilitation(CBR)forschizophrenia?

Schizophrenia is a long-term illness, which can lead to severe disability in the individual,

especiallyifthecommunitydoesnotacceptthem.Theillnesscanalsoplaceaheavyburdenon

thefamily.Peoplewithschizophreniausuallyneedaperiodofrehabilitationandfamilysupport.

Rehabilitation is where people are helped to regain skills and to return to their usual life

activities.

Community-basedrehabilitation isawaytohelppeoplewithdisabilitiestobe included inthe

lifeof theircommunities. Itaddressesallareasofaperson’s life includinghealth, inclusion in

social lifeandactivitiesofthecommunity, livelihoodandwork,educationandempowerment.

Empowermentmeansthattheindividualhastheabilitytomakedecisionsabouttheirownlife.

Thefocus isalwaysontheneedsandwishesofthe individual.AsaCBRworkeryouwillwork

withindividualswithschizophrenia,theirfamiliesandtheircommunitiestohelptheindividual

togetbacktotheirusualactivitiesandbeacceptedfullyintosociety.

Whoisthismanualfor?

Thismanual is for community-based rehabilitationworkers,whowill beworkingwith people

withschizophrenia.

Howtousethismanual

Thismanualisdesignedtohelpyou:

Understandwhatschizophreniaisandtheproblemsitcauses

àthisiscoveredinSectionA

LearnhowtohelppeopleschizophreniaandtheirfamiliesthroughCBR

àthisiscoveredinSectionB

KnowhowyouwillbesupportedtodeliverCBR

àthisiscoveredinSectionC

ThroughoutthemanualyouwillfollowtheexperiencesofYosefandSara,peoplewith

schizophrenia,andtheirfamilies.YosefandSaraarenotrealpeople,buttheirstoriesinclude

situationsandeventsthatrealpeoplewithschizophreniahaveexperienced.

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SECTIONA:Understandwhatschizophrenia

isandtheproblemsitcauses

RISE

8

1 Whatismentalillness?

1.1 Whatdoestheminddo?

Theminddoesthefollowingtasks:

• Perceiving:thismeanssight,hearing,smell,tasteandtouch

• Thinking:thismeansmemory,judgementanddecision-making

• Feeling:thismeansemotionssuchassadnessandhappiness

• Behaviour:thismeanshowweact

1.2 Whatismentalhealth?

Mentalhealthmeansthemindisworkingwellandweareproductive,wehavegood

relationshipswithothersandweareabletocopewellwhenproblemshappen.

1.3 Whatismentalillness?

Mental illness is any illness experiencedby a person that affects their emotions, thoughts or

behaviour,andhasanegativeeffectontheirlifeorthelivesoftheirfamily.

1.4 Whatisdisability?

Disability iswhere people have difficulty doing their normal activities andbeing part of their

community.Manypeoplewithmentalillnessexperiencedisability.

1.5 Whydopeoplesometimesbecomementallyill?

Likeinotherpartsofthebody,themindcanhaveproblemsandnotworkperfectlyallthetime.

Mentalillnessesarecausedbyproblemswiththewaythemindworks,especiallywhenweare

affectedbystressesoflife.Mentalillnesscancauseproblemswiththefourtasksofthemind:

perceiving,thinking,feelingandbehaviour.

1.6 Canpeoplewithmentalillnessrecover?

Itisimportanttorememberthatallpeoplewithmentalillnesshavethepossibilityofrecovery.

Recoverydoesnotalwaysmeanthattheillnesswillbecuredcompletely.Insteaditmeansthat

thingshaveimproved,anddisabilityisreduced,inawaythatisimportanttotheindividual.In

ordertomakesureindividualshavethepossibilitytorecover,itisimportanttoalwaysfocuson

theirownneedsandwishes.

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1.7 Whattypesofmentalillnessarethere?

There are two main groups of mental illnesses: severe mental illness and common mental

illness. Severe mental illness includes schizophrenia or psychosis. Common mental illness

includesanxiety,depressionandalcoholproblems.Severementalillnessisusuallymoreserious

anddisablingthancommonmentalillness.Individualsmayhavemorethanonethanonetype

ofmentalillness.Forexample,peoplewithschizophreniamayalsohaveanalcoholproblem.In

thismanualyouwilllearnlotsmoreaboutpeoplewithschizophrenia,andhowyoucansupport

themthroughCBR.

1.8 Howcanwerecognisementalillness?

Whenpeoplehavementalillnesstheyoftenbehaveincertainwaysthathelpsustorecognise

thattheillnessisthere.

Psychosisorschizophrenia

SomeonewhohasANYofthefollowing: Mayhave:

• Talks alone, saysmeaninglesswords or speaks in a strange language, talks

veryfast

Psychosis or

schizophreni

a or ‘severe

mental

illness’

• Isoftenveryrestless;hasmoodswingsfromveryhappyorirritabletofeeling

verysad

• Hasfalsebeliefsorsuspicions,e.g.thatsomeoneistryingtoharmthem,or

thattheyhavespecialpowers

• Showsself-neglect(e.g.dirty,untidyappearance)

• Ishearingvoicesorseeingthingsthatarenotthere

• Neglectsorhasdifficulties in carryingoutusualwork, schoolperformance,

domesticorsocialactivities

• Behavesstrangelye.g.runningoutofthehouse,runningnaked

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Seizures


• Suddenlyfallsdownandhassharp,shakybodymovements(seizures)

Epilepsy

• Duringtheseizure,heorshe:

–losesconsciousnessordoesnotrespondnormally

–hasstiffbody,armsandlegs

–maybitetheirowntongue,injurethemselves,andwetorsoiltheirclothes

• After the seizure: the person may feel very tired, sleepy, confused, and

complainofheadache,muscleaches

Excessivesadnessorworry


• Complainsofmanyphysicalsymptomsbutnophysicalcausehasbeenfound

(e.g.headache,burningsensations,achesandpains)

Depression

oranxiety

• Haslowenergy;isalwaystired;hassleepproblemsordoesnotwanttoeat

• Alwaysseemssadoranxiousorirritable;feelshopelessorhelplessorguilty

• Haslowinterestorpleasureinactivitiesthatusedtobeenjoyable

• Worriesorthinksaboutday-to-dayproblemstoomuch

• Isnotableormotivatedtodotheirusualjob,houseworkorsocialactivities

• Hasbeenthinkingofharmingthemselves,e.g.endingtheirlife

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Alcoholproblems


• Often appears to be affected by alcohol (e.g. smells of alcohol, looks

intoxicated,staggerswhenwalking,slurredspeech)

Alcohol use

disorder

• Becauseofalcohol,often injures themselves,e.g. fromfallingdown, fights,

orwalkingintraffic

• Has physical symptoms from excessive alcohol use (e.g. can’t sleep, very

tired,can’teat,vomits,complainsofbadstomach,diarrhoea)

• Hasfinancialdifficultiesorcrime-relatedordomesticproblems

• Has difficulties in carrying out usual work, school, domestic or social

activities;doesnotattendoroftenarriveslate

Khatproblems


• Oftenappearsdrug-affected (e.g. lowenergyor agitated, fidgeting, slurred

speech,suspicious,mayseeorhearthingsthatarenotreal)

Khatorother

druguse

disorder

• Shows signs of drug use, e.g. skin infection, unkempt appearance, burned

lips,badorwornteeth,hasdukak(unpleasantdreams)

• Hasfinancialdifficultiesorcrime-relatedlegalordomesticproblems

• Has difficulties in carrying out their usual work, school, domestic or social

activities;doesnotattendoroftenarriveslate

Problemswithforgetfulness

AnolderpersonwhohasANYofthefollowing: Mayhave:

• Can’t tell the timeofday,or forgetswhere theyare, forgets thenamesof

objectsormaynotrecognisefamiliarpeople

Dementia

• Getslostwhenoutsidethehome

• Hasdifficultorembarrassingbehaviour

• Oftenlosesemotionalcontrol,iseasilyupset,irritableortearful

• Lackofattentiontopersonalhygiene,incontinence

• Hasdifficultiesincarryingouttheirusualwork,domesticorsocialactivities

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Childmentalhealthproblems

AchildwhohasANYofthefollowing: Mayhave:

• Isusuallykeptinthehouse,andmaybetieduporchained

A childhood

mental

health or a

development

alproblem

• Peoplesaythechildbehavesbadly(e.g.isnaughty,aggressive)

• Peoplesaythechildbehavesoddly,orispossessedorcursed

• Doesnotspeakorrespondlikeotherchildrenofthesameage

• Hasproblemsdressing,feedingorwashingthemselvesorusinglatrineatthe

usualage

• Is always playing on their own, rocking, flapping their hands, or other odd

behaviour

• Isoftenbeingbulliedorteasedbyotherchildren

• Ishavingproblemsatschoolorisoftensenthomebyteachers

1.9 Whatshouldwedowhenwerecognisesomeonehasmentalillness?

You will learn what to do when you recognise someone with a mental illness other than

schizophreniainChapter38.

1.10 Summary

• Mental illnessesarecausedbyproblemsinthemind,whichhappenwhenpeoplehave

lotsoflifedifficultiesandstresses

• Mental illness cause disability, which iswhen people find it difficult to do their usual

activities

• Everyonewithmentalillnesshasachanceofrecovery(gettingbetter)

• Therearedifferenttypesofmentalillnesswhichhavedifferentsigns

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2 Whatisschizophrenia?

2.1 Whatkindofillnessisschizophrenia?

Schizophreniaisatypeofmentalillness.Peoplewithschizophreniahaveproblemswiththeway

theirmindworksinthefollowingareas:

• Perceiving:Topeoplewithschizophreniathingsthatarenotrealmightseemasifthey

arereal

• Thinking: People with schizophrenia have confused or strange thinking. They believe

thingsthatarenottrue.

• Feeling: People with schizophrenia have fewer emotions or stronger emotions than

usual

• Behaviour:Peoplewithschizophreniamaybehaveinastrangeway.

2.2 Whatarethesymptomsofschizophrenia?

Therearefourgroupsofsymptomsofschizophrenia.

1. Hallucinationsanddelusions

Hallucinationsarewhenapersonexperiencessomethingthatisnotreallyhappening.Theymay

hearsoundsthatarenotreallythere, forexampleavoicetellingthemtodosomething.They

mayseethings,feelthingsorsmellthingsthatarenotreallythere.

Delusionsarewhenapersonbelievessomethingthatisnotreallytrue.Forexample,theymay

believethattheyhavespecialpowers.Ortheymaybelievethatpeoplearetryingtopoisontheir

food.

Hallucinationsanddelusionsmaymakepeoplebehaveinastrangeway.Forexample,theymay

talktothemselves,saymeaninglesswords,speakinastrangelanguageorspeakveryfast.They

mayalsohavemoodswings,fromveryhappyorirritabletofeelingverysad.

2. Problemswithmotivation

Peoplewith schizophrenia often have low levels ofmotivation. They often do things slower,

includingthinking,talkingandmoving.Theymayfeeltheyhavenoenergytodoanything.They

maynotbotherwashingordressingproperly. Theymaynotbe interested in talking toother

people.Theymaynotshowanyemotions.

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3. Problemswiththinkingclearly

Peoplewithschizophreniaoftenhaveproblemsconcentratingonatask,orrememberingthings.

Thismeansitisdifficulttofollowaconversationordohouseholdtaskssuchascooking.

4. Lackofawarenessofillness

Oftenpeoplewithschizophreniadounderstandorbelievethattheyareunwell.Theymaynot

realisethattheyarebehavingstrangely.

2.3 Whatcausesschizophrenia?

There is not one thing that causes schizophrenia and you cannot catch schizophrenia from

someone else. Schizophrenia is usually caused by a combination of vulnerability and life

stress.Protectivefactorscanstopschizophrenia fromdevelopingorgettingworseevenwhen

vulnerabilityandlifestressarethere.Wedon’talwaysknowwhyapersongetsschizophrenia.

Vulnerability

Vulnerabilitymeansthingsthathappenbeforeapersonisbornorearlyinlife.Itincludes:

Yosef’sstory

Yosef isa24yearoldmanwho lives ina ruralkebelewithhismother,Addis, father,Solomon

andyounger siblings.About fiveyearsagohewasworkinghardonhis family’s farm.He had

friendsinvillagewhohewenttothealcoholshopswith,ordrankcoffee.Hewasn’twealthybut

wasseenassuccessfulinthekebele.Healwayswenttothekebelemeetingsandcontributedto

Edir.Hismotherhopedhewouldgetmarriedsoon.

AboutfiveyearsagoYosefbegantobehaveinastrangeway.Peopleinthekebelenoticedthat

he talked to himself and laughed to himself. He confided in hismother that SaintMarywas

communicatingwithhimandtoldhimthathehadtodospecialtasks.Sometimesheranaway

forseveraldays.Hebegantobelievethattheneighbourshatedhimandweretryingtoruinhis

crops.Sometimesheshoutedattheneighboursandthreatenedthem.

Astimehasgoneon,hehasstoppedtalkingabouthisstrangebeliefsmostofthetimeandheno

longerrunsaway.Butheisstillnotbacktohisusualself.Hehasstoppedworkingonthefarm

andspendsthedaysbyhimself.Hestoppedwashinganddressingproperly.Thingsdon’tseemto

be improving for Yosef. Every fewmonths he becomes much more unwell again. When this

happensheseemstobeverydistressedandshoutsattheneighboursagain.

15

• Aperson’smotherhavingproblemsduringherpregnancy,forexampleaninfection.

• Havingadifficultbirthduringwhichthebabyisinjured.

• Havingaheadinjury.

• Usingkhatfromanearlyage.

• Beingabusedduringchildhood.

• Whensomeonehasschizophreniainthefamilymostofthefamilymemberswillnotdevelop

schizophrenia,butthereismorechanceofithappening.

Lifestress

Lifestressmeanseventsorcircumstancesinaperson’slifethatputalotofpressureonthem.

Theymightleadthemtofeelangry,anxiousorsad.Thesemightinclude:

• Beingdisappointedaboutabigthing.Forexample,arelationshiporinwork.

• Movingtoanareawheretheydon’tknowanyone

• Familyconflict

• Illness

• Bereavement

• Havingchildren

Noneofthesethingsalonemeanthatapersonwillgetschizophrenia.Itonlyhappenswhen

thepersonhasatleastonetypeofvulnerabilityandatleastonetypeoflifestress.

Preventativefactors

Preventativefactorsarethingsthathelptostopapersonbecomingunwellwithschizophrenia,

orstopitfromgettingworse.Theyinclude:

• Goodsocialsupport

• Goodcopingstrategies

• Regularanti-psychoticmedication

Yosef’sstory

Yosef’sfamilybelievethathisproblemsareduetobeingpossessedbyspirits.Hisproblems

allseemedtostartwhenhebecameverydisappointedthathedidnotmarrythewomanhe

expected to. In the years before Yosef’s problems started life had been stressful for the

family.Someofhisyoungersiblingshaddiedandtherehadbeenapoorharvestafewyears

inarow.

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2.4 Whatbeliefsdopeoplehaveaboutschizophrenia?

Peoplewithschizophrenia,theirfamiliesandotherpeopleinthecommunitymayhavebeliefs

about what causes schizophrenia which are different from the explanation given here. In

Ethiopiathemostcommonbeliefsarethatschizophreniaiscausedbyspiritpossession,evileye

orpossessionbythedevil.Thesamepersonmayevenhavelotsofdifferentideasaboutwhat

causes it. Having different beliefs is not always a bad thing by itself. Having different beliefs

becomesaproblemwhenitresultsin:

• Peoplewithschizophrenianotgettingtreatmentthatworks,forexamplenotbeingtakento

thehealthcentreorhospitaltogetmedication

• Peoplewith schizophrenia being treated badly, for example being beaten to exorcise the

devil

2.5 Howlongdoesschizophrenialast?

Schizophreniacaneitherlastashorttime(evenoneepisode),butusuallylastslonger,evenfor

manyyears.Therearetwomainwaysthatpeoplecanbeaffectedtoschizophrenia:

• Short-term,moresevereillness:Duringthisphasethepersoncanbeverydisturbed.They

oftenhaveproblemswithhallucinationsanddelusions.Thismayleadthepersontobehave

strangely.Theymayspeakandthinkinastrangeway,andmaybecomeangry.It isusually

duringthisphasethatthefamilyofthepersontryandgethelp,forexamplebygoingtoholy

waterorthehospital.Theacutephaseusuallylastsfromweekstomonths.

• Long-term,established illness:Duringthisphasethepersonmaystopbehavingstrangely,

but they still have problems with motivation and with thinking clearly. They may have

problemswithdoingusualactivities,suchasgettingdressedordoingfarmwork.Theymay

finditdifficulttotalktootherpeopleorsocialise.Thisphasecanlastformonths,yearsor

canbelife-long.

Mostpeoplewithschizophreniahaveashort-term,moresevereillnessatthebeginning.What

happensnextvariesalotfrompersontoperson.

• A fewpeopledonot have anymore severe illness. Theymayormaynot have some less

severeillness.

• Mostpeoplewithschizophreniahave repeatedepisodesofmoresevere illness.Theseare

knownasrelapses.Inbetweentheyusuallyhavesomelesssevereillness.

• Afewpeoplestayunwellwithmoresevereillnessallthetime

17

2.6 Canpeoplerecoverfromschizophrenia?

The important thing to remember is that everyone with schizophrenia has a chance to get

betterandtorecover.Evenifanindividualdoesnotgetridofalltheirsymptoms,theyhavea

goodchanceofgettingback to theirnormalactivities.Recovery canmeandifferent things to

differentpeople.Itdoesn’tusuallymeanthatanindividualis‘cured’ofschizophrenia.Insteadit

means that things have improved in a way that is important to that person. Getting lots of

support,takingmedicationandnotusingalcoholorkhatmakeitmorelikelythiswillhappen.

Evenifapersonwithschizophrenia isfeelingmuchbetter,theymaysuddenlybecomeunwell

againwitha relapse.Relapsesmayhappendue tonot takingmedication,physical illness, life

stress or for no particular reason. The signs that a relapse is coming include problems with

sleep,beingisolatedfrompeople,beingangryoranxiousandstoppingmedication.InChapter

30youwilllearnhowtopreventandmanagerelapses.Havingarelapsedoesn’tmeantheywill

be unwell forever and it is important for the individual and family not to give up hope that

thingswillimprove.

2.7 Howisschizophreniadiagnosed?

There is no test for schizophrenia. The doctor or nurse decides whether someone has

schizophreniaornotbylisteningtotheirproblemsandhowlongtheyhavelasted.

2.8 Howcommonisschizophrenia?

Schizophreniaisnotaverycommondisease.Inakebeleof5000people,theremightbearound

10peoplewithsevereschizophrenia.

2.9 Howdowegiveinformationaboutschizophrenia?

YouwilllearnhowtogiveinformationaboutschizophreniainChapter16.

2.10 Summary

• People with schizophrenia have hallucinations, delusions, problems with motivation,

problemswiththinkingclearly,andusuallydonotunderstandthattheyareunwell

• Schizophreniaiscausedbyacombinationofvulnerability(earlyevents)andlifestress

• Peoplewithschizophreniacanhaveperiodsofshortterm,severeillnessandlong-termless

severeillness

• Allpeoplewithschizophreniahavethechanceofrecovery(gettingbacktousualactivities)

• Schizophreniaisnotverycommon

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3 Medicationforschizophrenia

3.1 Whatisanti-psychoticmedication?

Takingregularanti-psychoticmedication isan importantpartof treatment forallpeoplewith

schizophrenia.

3.2 Whyisitimportanttotakeanti-psychoticmedication?

Taking anti-psychotic medication may improve the chances of recovery. Anti-psychotic

medicationisgoodatreducingthefollowingsymptomsofschizophrenia:

• Hallucinations(seeingorhearingthingsthataren’treallythere)

• Delusions(believingthingsthataren’ttrue)

Anti-psychoticmedicationislesshelpfulforthefollowingsymptomsofschizophrenia:

• Problemswithmotivation,includingshowingemotions

• Problemswiththinkingclearly,includingconcentratingandbeingorganised

3.3 Whenisanti-psychoticmedicationneeded?

• Whenapersonwithschizophreniaisunwell,anti-psychoticmedicationisneededtoreduce

thesymptoms

• Evenwhenthepersonhasbecomebetterandhasnosymptoms,medicationisstillneeded

topreventrelapse(i.e.preventthepersonbecomingunwellagain).

• Antipsychoticmedicationworksbestwhentakenregularlybutitcanbedifficultforpatients

tokeeptakingmedication.

3.4 Whattypesofanti-psychoticmedicationarethere?

Anti-psychoticmedicationsareavailable in tabletand injection forms (seeTable1). Injections

arenormallygivenwhenthepersonwithschizophreniahasdifficultyrememberingtotaketheir

tablets or has experienced lots of relapses (when the severe illness comes back).

19

Table1Medicationsforschizophrenia

Nameofmedication Brandname Typeofdrug How often it should betaken

Haloperidol Haloperidol Tablet OnceortwiceadayChlorpromazine CPZ Tablet OnceortwiceadayFluphenazine Modecate Injection Fortnightlytomonthly

3.5 Whatsideeffectsdoanti-psychoticmedicationshave?

Medicationcansometimescauseproblems(sideeffects)aswellashelp(SeeTable2).Theside-

effects fromanti-psychoticmedication are common so it is important that you knowhow to

recognise them.Despite these problems, formanypeople their quality of life is betterwhen

takingthemedicationcomparedtowhennottakingit.

Table2Sideeffectsofanti-psychoticmedications

CommonThepersonfeelsrestlessandcannotsitstillThehead,neckorbodybecomesstuckinanunusualpositionbecauseofmusclestiffnessThehandsshakeThepersonmovesveryslowlyThepersonissleepyduringthedayThemouthisdryAlotofsalivaisproducedConstipationThepersonfeelsdizzywhentheystanduptooquicklyfromlyingdownorsitting.ThepersonwantstoeatmorethanusualUnusualmovementsofthehead,neck,armsorlegsLesscommonSeizuresSuddenlydevelopingstiffmuscles,fever,andconfusionSexualproblemsSkinrashThepersoncannotpassurine

3.6 Canpregnantandbreastfeedingwomentakeanti-psychoticmedication?

Dependingonthewoman,pregnantandbreastfeedingwomenmayneedtostoporreduceanti-

psychoticmedication.

20

3.7 Howdowehelppeoplewithschizophreniatotaketheirmedication?

You will learn how to help people with schizophrenia to take their medication regularly in

Chapter20,includinghowyoucanhelpwithsideeffects.

3.8 Summary

• Anti-psychoticmedicationisoftenneededtohelppeoplewithschizophreniatorecover

• Itisimportanttotakemedicationwhentheindividualisunwell,andtocarryontakingthe

medicationwhentheindividualiswell(tostoptheillnesscomingback)

• Anti-psychoticmedicationcanbegivenintabletsorinjections

• Anti-psychoticmedicationcancauseside-effects

Yosef’sstory

Afterseveralyearsofbeingunwell,Yosef’sparentstookhimtothe localhealthcentreasthey

hadheardhemightbeabletogethelpthere.Hereanursediagnosedhimwithschizophrenia.

The nurse gave him anti-psychotic medication, called haloperidol. He was told to take the

medicationtwiceaday.YoseffoundthattakingthemedicationstoppedthevoiceofSaintMary

inhishead.Hisparentsnoticedthathestoppedshoutingattheneighboursandrunningaway.

HoweverthemedicationalsogaveYosefsomeproblems.Heisoftenverytiredanddrowsyand

hishandsoftenshake.Thesethingsmakeithardtodofarmwork.

21

4 Disabilitiesrelatedtoschizophrenia

4.1 Whatisdisability?

Disabilityiswhenapersoncannotdotheactivitiesthatwewouldnormallyexpectthemtodo,

giventheirageandsocialcircumstances.Disabilitycaninclude:

• Problemswiththebody,forexampleblindness

• Problemswithdoingphysicalactivities,forexamplewalking

• Problemsdoingusualworkandsocialactivities,forexamplegoingtomarket.

4.2 Whatcausesdisabilities?

Disabilitiesinpeoplewithschizophreniaarecausedbyacombinationofthesocialenvironment

inwhichthepersonlivesandtheillnessitself.Forexample,

• An individual may not be allowed to vote at the kebele meeting because of stigma and

discriminationinthecommunity(seeChapter6).

• Apersonwhodoesn’thaveanyfamilymaynotworkbecausetheyarenotbeingencouraged

todoso.

• Problemswithself-caremayresultfromlackofmotivation,asymptomoftheillness.

4.3 Whatlimitationsdopeoplewithschizophreniahave?

Peoplewithschizophreniausuallyexperiencemanytypesofdisability.Theseinclude:

1. Problemswithself-care

Thisincludesproblemswithwashing,dressing,brushinghairandeatingattherighttime.

2. Problemsdoinghouseholdtasks

Thisincludesproblemswithcooking,washingclothes,choppingwoodorfetchingwater.

3. Problemswithsocialinteractionsandparticipatingincommunitylife

Thisincludesproblemswithhavingconversationswithpeopleandproblemsattendingchurch,

funeralsorEdirmeetings.

4. Problemsinworking

Thisincludesproblemsdoingfarmwork,tradingorbusiness.

5. Problemsinlookingafterchildren

Thisincludesproblemsgivingchildrenlove,feedingandclothingthem.

6. Problemswithmaritalrelationships

Thisincludesnotgettingonwellandarguingalot.

22

4.4 Whatistheimpactofhavingdisabilities?

Disabilitymaybemoreupsettingtotheindividualthanthesymptomsthemselves.Forexample,

finding it difficult to drink coffee with others may be more distressing than simply hearing

voices.Disabilitiesmayresultinproblemswithmoney.Forexample,havingproblemswithfarm

workislikelytomeantheindividualhaslessmoney.Disabilitiesmayalsohaveabigimpacton

therestofthefamily.Forexampleifamotherwithschizophreniafindsitdifficulttolookafter

her children, other familymembersmay need to help out. These familymembersmay then

havetroublelookingaftertheirownfarmproperly(seeChapter5).

4.5 Howdoweassessdisabilities?

Youwilllearnhowtoassesswhatkindsofdisabilitiespeoplewithschizophreniahaveaspartof

theNeedsAssessment(seeChapter12).

4.6 Howdoweworkwithindividualstoimprovetheirsituation?

Theaimofrehabilitationistoworkwithindividualstoimprovetheirsituationsotheyareless

disabled and can get back to their usual activities. Rehabilitation should be an empowering

process. This means the needs and wishes of the individual are at the centre of the work.

Rehabilitation isn’tabout ‘doingthings’ toor forpeoplewhoaredisabled. It isaboutworking

togethertoimprovetheir lifeandworktowardsrecovery.Recoverycanmeandifferentthings

to different people. It doesn’t usually mean that an individual is ‘cured’ of schizophrenia.

Insteaditmeansthatthingshaveimprovedinawaythatisimportanttothatperson.Youwill

seethatallofCBRisfocusedtowardsrehabilitation.

4.7 Summary

• Disabilityiswhenanindividualcannotdotheactivitieswewouldnormallyexpect

• Disabilityiscausedbyacombinationofthesocialenvironmentandtheillness

• Peoplewithschizophreniacanhaveproblemswith:self-care,householdtasks,participating

incommunitylife,working,lookingafterchildrenandmaritalrelationships

• Rehabilitation involves work with the individual to reduce disability.

Yosef’sstory

Yosefdoesnotoftenwashordresshimself.Heno longerhelpsonthefamily’s farm.Hedoes

notcontributetoEdiranymore,insteadhereliesonhisparent’scontributions.Hedoesn’thave

anyfriendsanymoreanddoesnotgotoChurch.

23

5 Impactofschizophreniaonthefamily

Aswellashavingabigimpactontheindividual,whenapersonhasschizophreniaitalsohasa

bigeffectonthewholefamily.Thisisbecausethefamilyareusuallytheirmaincarers.Theseare

someoftheeffectstheillnesscanhaveonthefamily.

5.1 Comingtotermswiththeillness

Notmanyfamilies immediatelyknoworbelievethattheirrelativehasamentalillness.When

the individual is very unwell, the family members may be scared by what is happening.

When the episode is over, everyone wants to forget this painful time and focus on the

future.Familiesmayalsolookforotheranswers,hopingthatthesymptomswerecausedbya

physicalproblem orstressfuleventsthatcanberemoved.

5.2 Stigmaanddiscrimination

Even when families knowthattheirrelativehasamental illness, theymay notwant to talk

with others about it, because they fear other people’s reactionsormightbeembarrassed.

Otherpeople in thecommunitymay suggest that there is somethingwrongwith the family to

cause the illness.The family may notwant to invite anyone to the home.Or theymaybe

anxious about leaving the individual athome alone.Peoplewithschizophreniaoftenfindit

difficult togetmarried.This issometimesbecauseof thestigmatowardsthem,whichmay

continueeveniftheybecomewell.Thisputsanextraburdenontheparents.SeeChapterfor

moreaboutstigmaanddiscrimination.

5.3 Heavyresponsibilityofcaring

Familymembersmayspendalotoftheirtimelookingafterthepersonwithschizophrenia.Itis

often female caregivers, either the individual’s mother or wife, who take on most of the

responsibilities. Their household routine may be disrupted and it may be difficult to attend

social gatherings such as weddings. Sometimes caregivers, for example brothers and sisters,

evendecidenottomarrysothattheycantakecareofapersonwithschizophrenia.Intheend

thefamilymaybecomeisolatedfromthecommunity.Somefamiliesmayfeeltheydonotget

enoughsupport fromwider familymembersandthecommunity.Familiesmaybeconcerned

that the individual will run away, harm their neighbours’ property, or other people or get

hurtthemselves.Thismaymeanthat,asa lastresort,familieschainortieuptheindividual

24

toprotectthemandotherpeople.Alloftheseissuesmeanthefamilymembersoftenbecome

stressed,fullofworryandexhausted.

5.4 Economicimpact

People with schizophrenia usually need to take medication everyday for many months or

years.Thecostofthis,alongwiththecostofseeinganurseordoctor,andcostoftransportto

thehealthcentreorhospital,meansthefamilyhastospendalotofmoneyontheindividual.

The person with schizophreniamay find it difficult to do their own farmwork, day to day

labouringorbusiness.Thismeansthattheotherfamilymembershavemoreworktodo,and,

theremaybelessmoneycomingintothefamily.Alsothefamilymembersmaybeabletodo

lessworkthemselves,becausetheyarecarers.

5.5 Familyconflict

Family members may not understand the illness and blame the individual for their bad

behaviourandfornotworking.Theymaybecomefrustratedandangrythattheindividualisnot

gettingbetter.Conflictinfamiliestendstomakeschizophreniaworse,anditisimportanttotry

toreducethis.Theindividualthemselvesmayfeelbadaboutallthemoneyspentbythefamily

ontreatment.

5.6 Howdowehelpthefamiliesofpeoplewithschizophrenia?

The whole of CBR aims to improve the situation of families, by helping individuals with

schizophreniagetbacktotheirusualactivities.Inparticular,youwilllearnhowtoimprovethe

familyenvironmentinChapter25.

Yosef’sstory

ThelivingconditionofYosef’swholefamilyhasgotworsebecauseYosefcannotwork.Addisis

oftenscaredtoleaveYosefaloneincaseherunsawayagain.Thismakesitdifficultforhertodo

herusualwork likegoing tomarket.Hisparents can’tgo to funeralsorweddingsunlesshe is

asleep.TheydonothaveanyvisitorsatthehousebecausetheyareashamedofYosef.Theyfeel

thatnobody in the community helps them. Sometimes thewhole family has argumentsabout

Yosef.Theyargueaboutwhyheisnotgettinganybetter.

25

5.7 Summary

• Theremaybeextracosts tothefamilyofapersonwithschizophreniaandtheymayhave

problemsdoingusualactivities

• Thefamilymayexperiencestigma

• Theremaybeconflictwithinthefamily

26

6 Stigmaanddiscrimination

6.1 Whatisstigma?

Stigmaiswhenpeopleautomaticallythinkbadthingsaboutapersonjustbecausetheyhavea

mental illness.Stigma fromotherpeople towardspeoplewithschizophreniaconsistsof three

problems.

• Theproblemofknowledge.Thisiscalledignorance.

• Theproblemofattitudes.Thisiscalledprejudice.

• Theproblemofbehaviour.Thisiscalleddiscrimination.

All these types of stigma can be found in familymembers, communitymembers and health

workers.Stigmafromthepersonwithschizophreniatowardshimorherself,becausetheystart

to believe the negative things that other people say, is called self-stigma. Stigma and

discriminationisalsoexperiencedbyotherpeople,forexamplepeoplewithphysicaldisabilities,

albinism,HIVorepilepsy.

6.2 Whattypesofstigmadopeoplewithschizophreniaexperience?

Ignorance

Mostpeopleinthecommunityandsomehealthworkersdonothaveagoodunderstandingof

schizophrenia.Thismeanstheycanhavesomeofthefollowingfalsebeliefs:

• Nobodyrecoversfromschizophrenia

• Thereisnotreatmentforschizophrenia

• Peoplewithschizophreniaareviolentanddangerous

• Peoplewithschizophreniaarelazyandyoucannottrustthem

• Schizophreniaistheresultofspiritpossession

• Schizophreniaistheresultofaweakcharacter

• Everythingpeoplewithschizophreniasayisnonsense

• Peoplewithschizophreniacannotmakedecisionsabouttheirownlives

Prejudice

Prejudice is when people feel emotions such as anxiety, anger, hostility or disgust towards

peoplewithschizophrenia,aswellashavingignorantthoughts.Forexample,aneighbourmay

feelscaredwhilsttalkingtoapersonwithschizophrenia,evenifthepersonisnotactinginan

aggressiveway.

27

Discrimination

Discrimination iswhenpeoplebehavedifferently towardspeoplewithschizophrenia,because

oftheirignoranceandprejudice.Thiscanmeanthatindividualsarenotabletodotheactivities

that they used to when they were well. People with schizophrenia may continue to be

discriminatedagainsteven though theyhave recovered.Theyoften feel thatdiscrimination is

moredistressingthanthesymptomsoftheillness.

Herearesomeexamplesofdiscriminationwhichpeoplewithschizophreniaexperience:

• Communitymembersdonotgreettheindividualintheneighbourhood

• Communitymemberscalltheindividualrudenames,laughorgossipaboutthem

• Friendsdonotwanttotalkordrinkcoffeewiththeindividual

• Community members do not listen to the individual when they try to contribute at

communitymeetings,suchaskebelemeetingsoredirmeetings

• The individual cannot get a job or cannot be involved in a microfinance group because

employersorgroupmembersthinktheyarelazyandunreliable

• Theindividualfindsitdifficulttogetmarried

• Thefamilyaskstheindividualtohidewhenrelativesvisitthehouse

• Familymembersmaytieupthepersonwithschizophrenia.Thisisusuallydonebecausethe

person is veryunwell and the family cannot control them.However sometimes it is done

becausethefamilybelievestheindividualispossessedbyspiritsorthedevil.

Self-stigma

Somepeoplewithschizophreniastarttobelievethenegativeattitudesthatothershavetowards

them.Thiscanresultin:

• Lowself-esteem

• Feelingcriticaltowardsthemselves

• Feelinghopeless

• Depression

• Beingisolated

Peoplewithschizophreniamaystopthemselvesdoingactivitiesbecausetheyexpectpeopleto

berudetothem,laughatthem,ortreatthemdifferently.

28

6.3 Whattypesofstigmadofamiliesexperience?

Thefamilymembersofpeoplewithschizophreniacommonlyexperiencestigmatoo.Thewhole

familymaybetreatedwithlessrespectorpeoplemayavoidthem.Theymayalsobeblamedfor

theillnessintheindividual.

6.4 Howdowereduceexperiencesofstigma?

YouwilllearnhowCBRcanreduceexperiencesofstigmaanddiscriminationinChapter28.

6.5 Summary

• Stigma includes problems of knowledge (ignorance), attitudes (prejudice) and behaviour

(discrimination).

• Manypeoplewithschizophrenia,andalsotheirfamilies,experiencestigma

• Experiencesofstigmamayinclude:beinglaughedatorcallednames,beingexcludedfrom

communityactivitiesorwork,andbeingkepthiddenortiedup

Yosef’sstory

Sometimes people laugh and gossip about Yosef when he goes outside. Sometimes children

throwstonesathim.Yosefdoesn’thaveany friends anymore.His family doesn’t thinkhewill

evergetmarriednowhehasbecome ill.Oncewhenhewasfeelingbetterhewenttoakebele

meetingandtried toadd to thediscussion.Theotherpeopletheredidn’t sayanythingbadto

him,buttheyignoredhim.ThismadeYoseffeelbadandhedidn’tgothemeetingagain.Hehas

startedtobelieveotherpeopleandthinksheisworthless.

29

7 Humanrights

7.1 Whatarehumanrights?

Theterm‘humanrights’describesthebeliefthatallpeoplehavebasicrights,includingtheright

tolife,freedomofspeech,beliefandfreedomfromfear.TheEthiopianconstitutionstatesthat

humanrightsandfreedomareinourhumannature(Ethiopianconstitution,chapter10,No1).

Allpeoplehavehumanrights,regardlessofage,sex,ethnicityorreligion.Theserightsenablea

person to live their lifewithworthanddignity. TheEthiopianConstitution states thathuman

rightsshouldnotbeviolated.

7.2 Whathumanrightsdopeoplewithmentalillnesshave?

PeoplewithmentalhealthproblemshaveequalrightslikeanyotherEthiopiancitizen;theyhave

the sameneed for respectandcare.The following rightsapply topeoplewithmental illness,

justlikeallotherpeople:

• Theyshouldnotbechained,suffer,orbelockedupathomebecauseoftheirillness

• Theyshouldnotbeheldbypolicejustbecausetheyareill

• Theyhavetherighttohaveafamilyoftheirown,getmarriedandhavechildren;

• Theyhavetherighttowork

• Theyhavebasicrightsforfood,clothing,housingandmedicalservices;theyshouldnotbe

lefttostarve,orbehomeless.

• Theyshouldnotbeabused,disrespectedorcalledbadnames,orbeaten todriveoutbad

sprits.

Itisquitecommonforpeoplewithmentalillnesstobedeniedtheirhumanrights.

7.3 Howdowedealwithhumanrightsproblemsinpeoplewithschizophrenia?

InChapter19youwilllearnhowtohelpprotectthehumanrightsofindividuals.

Yosef’sstory

WhenYosefbecomesveryunwellhisparentssometimeschainhimtothewalloftheirhouse.

Theydothisbecausetheyareworriedhewill runawayandhurtsomeone,orgeteatenby

hyenasordrownintheriver.

30

7.4 Summary

• All peoplehave the sameHuman rights including the right to life, freedomof speech,

beliefandfreedomfromfear.

• Itisquitecommonforpeoplewithschizophreniatobedeniedtheirhumanrights

31

8 Theimportanceofthecommunity

8.1 Whatisthecommunity?

Everybodyliveswithinacommunityofsomekind.Whenwesaycommunitywemean:

• Agroupofpeoplelivinginthesameplace,forexamplethekebele

• Afeelingofsharedattitudesandinterests

Forpeoplewithschizophreniatheircommunitymightinclude:

• Theirfriends,neighboursandrelatives

• Communitymembersthatliveinthesamekebele,eveniftheydonotknowthem

• Communityleaderssuchaskebeleleaders,priestsortheheadteacher

Therearemanycommunityresourcesineverykebele.Theseinclude:

• Churchesandmosques,includingpriests

• Edirgroups

• Religiousgroupssuchasmahaber,tsewaandlika

• Primaryschool

• Women’sAssociationsandYouthAssociations

• Kebeleadministration

• Markets

• Traditionalhealers,forexampletanqwayorherbalists,andholywatersitesandholywater

priests

8.2 Whatproblemsdopeoplewithschizophreniahaveincommunitylife?

Peoplewith schizophreniaoften find theyhaveproblemsaccessing the community resources

anddoingtheirusualcommunityactivities(seeChapter26).Thesemightinclude:

• Notsocialisingwithfriendsandneighbours,forexampledrinkingcoffee

• Notattendingchurchormosque

• Notparticipatinginreligiousgroupssuchasmahaber

• NotparticipatinginEdir

• Not attending community groups such as the Women’s or Youth Association

32

8.3 Whatroledoesthecommunityhaveinthelifeofthepersonwithschizophrenia?

Positiveinfluences

Thecommunitycanhaveapositiveorsupportive influenceonthepersonwithschizophrenia,

suchas:

• Makingtheindividualfeelwelcomewhentheyparticipateincommunityactivities

• Helpingtheindividualandfamilywithfoodorotherpracticalsupportwhentheyarehaving

aparticularlydifficulttime

• Givingemotionalsupporttothefamily,forexamplelisteningtotheirproblems

• Organisingcommunityactivitiesthatthepersonwithschizophreniamaywishtobepartof.

Thisincludesgovernmentschemes,suchasadultliteracygroups,andlocalgroups,suchas

Edir.

• Helpingthefamilyintransportingtheindividualtothehealthcentreorhospital

Negativeinfluences

The community can also have a negative influence on the person with schizophrenia. The

community may make it even more difficult for the individual to participate in their usual

activities.Thisisusuallyduetostigmaanddiscrimination.SeeChapter6formoredetail.

8.4 WhatistheroleofthecommunityinCBR?

CBR aims to increase the positive influences of the community, and reduce the negative

influences. Italsoaimstohelppeoplewithschizophreniatoaccessthecommunityresources.

Thecommunityalsohasanimportantroleinmakingsurethepositivechangesthathavebeen

madeduringCBRarecontinuedaftertheCBRworkerhasleft(seeChapter31).Thecommunity

alsobenefits throughCBR.Once the individual isback todoing theirusualactivities, theyare

likelytobeamoreproductiveandactivecommunitymember.

8.5 Summary

• Peoplewithschizophreniaoftenhaveproblemstakingpartincommunitylife

• Thecommunitycanhaveapositiveornegativeinfluenceonthepersonwithschizophrenia

Yosef’sstory

Yosefusedtobeanactivememberofhiskebele.Thekebelechairpersonthinksthecommunity

hasbeenaffectedbyhisillness,andifYosefcouldgetbetterthecommunitywouldbenefit.

33

• TheaimofCBRistoincreasethepositiveinfluencesandreducethenegativeinfluencesof

thecommunity.

• CBR helps individuals to become more productive and active, so the community also

benefits

34

SECTIONB:Learnhowtohelppeoplewith

schizophreniaandtheirfamiliesthroughCBR

RISE

35

9 OverviewofCBRdelivery

9.1 Whatiscommunity-basedrehabilitation?

Community-basedrehabilitation isawaytohelppeoplewithdisabilitiestobe included inthe

lifeoftheircommunities.Itaimstoimprovethequalityofallareasofaperson’slife.Thefocus

isalwayson theneedsandwishesof the individual.CBRbenefits the family,by reducing the

burdenuponthem.Italsobenefitsthewholecommunity,byhelpingtheindividualtobeamore

activeandproductivecommunitymember.Sometimes ittakesa longtimetoseethepositive

impactsofCBR,soitisimportantthateveryoneinvolvedispatientandstayspositive.

9.2 WhataretheprinciplesofCBR?

1. Useaholisticapproach

CBRaddressesallaspectsoftheperson’slifeincluding:

• Social

• Livelihood

• Health

• Education

• Empowerment(aperson’sabilitytomakedecisionabouttheirownlife)

TheseareallareaswheretheindividualmightbehavingproblemsandwhereCBRcanmakea

positivechange.

2. Workwiththefamilyandthecommunity.

Thefamilyarethemaincarersforpeoplewithschizophreniaandtheaimistohandovercareto

family at the end of your involvement. The community also has an important role in the

individual’slife.Workingwiththecommunityisrequiredtomaximisetheimpactofthefamily

workandtoensurethepositiveimpactofCBRstaysafteryouhavegone.

3. Encouragerespectforhumanrights

AllofCBR,whetherworkwith the individual, familyorcommunity, shouldencourage respect

for the human rights of the individual. Treating people with schizophrenia with dignity and

respectisempoweringandwillmakeitmorelikelytheywillgetbacktotheirusualactivities.

4. Linktoexistingservices

Where possible, should involve linking the individual to existing services, for example the

governmentrunadultliteracyscheme.

36

9.3 WhoisinvolvedinCBR?

Thepersonwithschizophrenia

Thepersonwith schizophrenia should alwaysbe at the centreofCBR.By always focusingon

theirconcerns,needsandwishesyouwillbemorelikelytohelpthemtorecoverinawaythatis

importanttothem.Inthismanualwewillusuallyrefertothepersonwithschizophreniaas‘the

individual’.

Primarycaregiver

Theprimarycaregiver is themainpersonwho looksafter thepersonwithschizophrenia.This

maybeaspouse,parent,siblingorotherrelative.Veryoccasionallytheprimarycaregivermay

beaneighbour,friendorothercommunitymember.Theprimarycaregivershouldbeyourmain

pointofcontactwithinthefamily.Theyshouldalsobepresentatallhomevisits.Theywillhave

beenidentifiedbeforeyoustarttheCBR.

Otherfamilymembers

At your first visit you should find out which othermembers are involved in the care of the

person with schizophrenia. This may include a spouse, parent, sibling, child or grandparent.

Dependingontheindividualcircumstances,otherfamilymembersmaybeinvolvedinmanyof

thehomevisitsoronlyafew.Themanualwilltellyouwhenit isparticularlyusefultoinvolve

other familymembers. In thismanualwewill often refer to theprimary caregiver andother

familymembersas‘thefamily’.

You,theCBRworker

Youwillarrangeandleadallthehomevisitstothefamilyanddoallofthecommunitywork.

Yoursupervisor

Youwillbesupportedbyyoursupervisor.Yoursupervisorwillcomewithyouatcertainhome

visits,forexamplefortheneedsassessmentandgoalsetting.Youwillalsomeetregularlywith

themtodiscusstheprogressofeachindividual(seeChapter34).

HealthCentrestaff

Youwillbelinkedtoonehealthcentre,whereallthepeoplewithschizophreniayouareworking

withwillreceivetheirmedicalcare.Youwillneedtogowiththeindividualtothehealthcentre

everyfewmonths,aroundthetimeofeachCBRReview.Thereareseveralsituationswhenyou

shouldsendtheindividualforareviewatthehealthcentre(seeChapter37).

Trialpsychiatricnurse

37

Incertaincircumstancesyouoryoursupervisormayneedtocontactthepsychiatricnurse.This

will usually bewhen a serious event has occurred, such as the individual attempting suicide.

ThereismoredetailonwhentocontactthepsychiatricnurseinChapter35.

Communityleaders

Communityleaderswillbeinvitedtoattendawareness-raisingmeetings.Youmayalsoneedto

haveindividualmeetingswithcertaincommunityleaderstohelpwithpartsofCBR.

Communitymembers

Communitymemberswillbeinvitedtoattendpublicawarenessraisingevents.

9.4 WhereandwhendoesCBRtakeplace?

Most of CBR takes place through home visits, where you will meet with the individual and

family.Youshouldtrytofitthelocation,durationandfrequencyofthehomevisitsaroundthe

needsandwishesoftheindividualandfamily.Thesevisitswillusuallylastbetween30and90

minutes,butmaybeshorter ifnecessary. Insomecases the individualor familymaynot feel

comfortableforyoutovisitthemathome.Atthefirstvisityoushouldoffertoseethematthe

healthpost instead, if theywish.Whereveryoumeet the individual, thecaregiveroranother

familymembershouldalwaysbepresentornearby.Howoftenyoumakethehomevisitsare

dependsonthephase.YouwilllearnaboutthePhasesinsection9.7.Wesuggestthefollowing,

butthismayvarybetweenfamiliesorduringharvesttimeorfestivals:

PhaseI:Everyweekorevery15days

PhaseII:Every15days

PhaseIII:Everymonth.

The communityworkwill take place at different places in the kebele. For example, youmay

meetthekebeleleaderatthekebeleoffice.

9.5 HowlongdoesCBRlast?

Youwillworkwitheachindividualfor12months.Evenifthe individualbecomesmuchbetter

whilstyouareworkingwiththem,youshouldstillcontinuetovisitthemduringthe12-month

period.Thiswillhelpthemtokeepwellanddevelopmoreskills.

9.6 HowdowestartCBR(initialvisit)?

Yoursupervisorwillgiveyouthenameandcontactdetailsoftheindividualsyouwillbeworking

with. You will arrange the first home visit by phone or in person. You can ask the Health

38

ExtensionWorkertohelpyoutofindthehomeoftheindividual.Overthefirstoneortwovisits

youshouldgivethefollowinginformation:

• Introduceyourself

• Describe thestructureandpurposeofCBR (seesection9.1and9.7).Explain thatyou

arenotabletooffermoney,aloanorajob.Explainthatthefamilydonotneedtopay

youorgiveyougifts.

• Describethemodulesyoumightcover(seesection9.7)

• Discussconfidentiality(seeChapter10,section10.6)

• Explainthatthecaregiveroranotherfamilymembershouldbepresentornearbywhen

youdothevisits

Youshouldalsogatherthefollowinginformation:

• AskwhytheydecidedtoparticipateinCBR

• Askhowlongtheyhavebeenunwellandwhentheyfirstsoughthelp

• Askiftheyaregenerallywellorunwellatthemoment.Askwhatproblemstheillnessis

causingatthemomente.g.behavingstrangely,beingunmotivated.

• Relationshipofprimarycaregivertoindividual

• OtherfamilymemberswhowillalsobeinvolvedinCBR.Inparticularthinkaboutwhich

familymember/shavemostpowerandinfluence.Thismaybeanolder,malerelative.

• Homeenvironmentincludingwholivesinthehome,thetypeandconditionofthehome,

positionof the homeand any issueswith access, and incomeand landownedby the

family.

• Preferredlocationofvisits(homeorhealthpost)

• Iftheindividualiscurrentlychained

• Iftheindividualiscurrentlyaccessingthehealthcentre

• Iftheindividualiscurrentlyaccessingmedication

• Contactdetailsoftheprimarycaregiver

• Urgent needs which need addressing immediately, before the next home visit. For

example,theindividualissuicidalorseriouslyillwithaphysicalhealthproblem.

• Theparticularstrengths,opportunitiesandchallengesforthatfamily.

YoushouldrecordthisinformationontheInitialAssessmentform(Form1).

39

9.7 WhatarethephasesofCBR?

This CBR is divided into three phases. At each phase you will be helping the individual in

differentways.Thisisbecauseastimepassespeoplewithschizophreniawillusuallyhavesome

improvement,sotheirneedswillchange.AtthebeginningofeachPhaseyouwillconductaCBR

Reviewtogetherwithyoursupervisor.Thekeyareas foreachphasearedescribedbelowand

summarisedinTable3.

PhaseI

During Phase I the aim is to get to know the individual and family and to develop a trusting

relationshipwiththem.YouwillcompletethefourPhaseImoduleswithall individuals.These

modulesareimportantforallpeoplewithschizophreniaastheyaddressbasicneeds:

• Understandingschizophreniaanditstreatment

• Improvingaccesstohealthservices

• Dealingwithhumanrightsissues,whentheyarise

• Preparingforacrisis

CBR Review I, at the beginning of Phase I, helps to decide which order to address these

modules.ThelengthofPhaseIdependsontheparticularcircumstancesoftheindividual.Itmay

lastforaroundthreemonths,butitmaybemuchshorterormuchlonger.AttheendofPhaseI

youmaywishtorevisethemainissuesyouhavecoveredbeforemovingtoPhaseII.

PhaseII

AsidefromthebasicneedsaddressedinPhaseI,peoplewithschizophreniahaveverydifferent

disabilities and needs. In CBRReview II, at the beginning of Phase II, youwill therefore do a

NeedsAssessment.Thishelpsyoutodecidewhichareastofocuson.TheNeedsAssessmentis

describedinChapter12.OnthebasisoftheNeedsAssessmentandthewishesoftheindividual

and family, you will set goals to work towards during Phase II. Goal Setting is described in

Chapter13.Tomakesurewearetakingactionstoachievethesegoals,youwillthendelivera

seriesof linkedModules.Theexactmodules thatyoudeliver to the individualwilldependon

whichproblemshavebeenidentifiedintheNeedsAssessment.Dependingontheneedsofthe

individualPhaseIImayincludethefollowingmodules:

• Supportingindividualstotakemedication

• Improvingdaytodayfunctioning

• Improvingthefamilyenvironment

• Managingstressandanger

40

• Takingpartincommunitylife

• Gettingbacktowork

• Dealingwithstigmaanddiscrimination

• Dealingwithdistressingsymptoms

• Improvingliteracy

• Improvingphysicalhealth

• Takingcontrolofyourhealth

In Phase II youwill also set up a Family SupportGroup in each kebele. All caregivers, and in

somecasespeoplewithschizophrenia,areinvitedtotheseGroups(seeChapter32).Thelength

ofPhaseIIdependsontheparticularcircumstancesoftheindividual.Itmaylastforaround4to

6months,butitmaybemuchshorterormuchlonger.AttheendofPhaseIIyoumaywishto

revisethemainissuesyouhavecoveredbeforemovingtoPhaseIII.

PhaseIII

ThenewfocusinPhaseIIIispreventionofrelapse(stoppingtheillnessreturning).Thereforethe

ModulethatwecoverwitheveryoneinPhaseIIIis:

• Takingcontrolofyourhealth

ThemainpurposeofPhaseIIIistomaintaintheprogressmadeinPhaseII.However,individuals

will still have different needs, and thesemay have changed over time since Phase II. In CBR

Review III at the beginning of Phase III you will therefore do another Needs Assessment.

Dependingontheneedsoftheindividual,andthegoalsthatareset,PhaseIIImayincludeany

of the Phase II modules. The Family Support Groups should continue through Phase III. The

length of Phase III depends on the particular circumstances of the individual. Itmay last for

around3to6months,butitmaybemuchshorterormuchlonger.

Table1OverviewofRISECBRstructure

Phase CBRReview Goals Modules Communityengagementtasks Family SupportGroup

I CBRReviewI:• Initial

Assessment• Needs

Assessment• Goalsettingfor

PhaseI• RiskAssessment• Accompanyto

healthcentre• Rehabilitation

plan

Individualandcaregiverhavebeeninformedofwhatschizophreniais,availabletreatments,andthepotentialforrecovery

Understandingschizophreniaanditstreatment

Task1:Meetwithhealthextensionworker/sTask2:IdentifykeycommunityleadersTask3:IdentifykeycommunityresourcesTask4:AscertainwhatcommunityengagementrelatingtomentalillnesshasalreadytakenplaceorisplannedTask5:MeetwithkeycommunityleadersTask6:Communityawareness-raisingTask7:Identifypotentialemploymentopportunitiesinthekebele

Individualisabletoaccessmedicationandattendhealthcentreformentalhealthasindicatedbyclinicalstatus

Improvingaccesstohealthservices

Crisismanagementplanisinplace PreparingforacrisisPersonwithschizophreniaisnotchainedorrestrained

Dealingwithhumanrightsissues

II CBRReviewII:• Needs

Assessment• Goalsettingfor

PhaseII• RiskAssessment• Accompanyto

healthcentre• InvitetoFamily

SupportGroup• Rehabilitation

plan

Individualiswillingtotakemedication Supportingindividualstotakemedication

Task8:IndividualmeetingswithKebeleleadersTask9:IndividualmeetingswithEdirleadersTask10:IndividualmeetingswithreligiousleadersTask11:Individualmeetingswithtraditionalhealer/holywaterpriest/attendant

SupportgroupactiveIndividualhasstrategiestoremember

totakemedicationIndividualfeelssideeffectsareimprovingIndividualfeelshallucinationsanddelusionsareimproving

Dealingwithdistressingsymptoms

IndividualfeelsproblemswithmotivationandthinkingclearlyareimprovingIndividualisabletoaccesshealthservicesforphysicalandsexualhealthneedsandcontraceptionwhen

Improvingaccesstohealthservices

required Task12:Demonstrateprogressofclient/stocommunityleaders/widercommunityTask13:CommunityawarenessraisingconsolidationTask14:FacilitateemploymentopportunitiesinthekebeleTask15:Individualmeetingswithliteracygroupleader

Individualhasstrategiestodealwithstressandanger

Managingstressandanger

Individualhasinformationtomakedecisionsabouthealth-relatedbehaviours

ImprovingPhysicalHealth

Individualhasgoodphysical,sexualandreproductivehealthIndividualisnotmalnourishedIndividualparticipatesincommunitylife

Takingpartincommunitylife

IndividualparticipatesinreligiousactivitiesiftheyareimportanttotheindividualPersonwithschizophreniaisabletointeractsociallywithneighboursandfriendsIndividualhasimprovingabilitytodoparentingactivities

Improvingthefamilyenvironment

IndividualcancarryoutusualfamilyroleIndividualhasimprovedrelationshipwithfamilymembersCaregiverhasimprovedabilitytocopeIndividualhasimprovingself-care Improvingdaytoday

functioningIndividualhasimprovingabilitytodohouseholdtasksIndividualhasimprovingself-esteem Dealingwithstigmaand

Individualdoesnotfeeldiscriminatedagainst

discrimination

Individualisnotthevictimofphysical,sexualoremotionalabuse

Dealingwithhumanrightsissues

Individualhasrestoredparticipationinlivelihoodactivities,includingfarmwork

Gettingbacktowork

Individualhasbasicliteracyskills Improvingliteracy3 CBRReviewIII:

• NeedsAssessment

• GoalsettingforPhaseIII

• RiskAssessment• Accompanyto

healthcentre• Rehabilitation

Plan

Individualhasrelapsepreventionplan Takingcontrolofyourhealth

AnyPhase2CommunityEngagementtask

Supportgroupactive

AnyPhase2goal AnyPhase2module

9.8 WhataretheCBRReviews?

TheCBRReviewsareachanceforyoutodiscussthe individual’sprogresswiththe individual,

thefamilyandyoursupervisor.TheytakeplaceatthebeginningofeachPhase.Whatyoucover

intheCBRReviewdependsonthePhase.JustbeforeoraroundthetimeofeachCBRReview

you should go with the individual to the health centre. By doing this you will get more

information about the progress the individual is making and any problems they are having.

EverytimeyouaccompanyanindividualtothehealthcentreyoushouldrecorditontheHealth

CentreContactForm(Form2).EachCBRReviewwillusuallytakemorethanonehomevisitto

complete. You should complete the CBR Review Form (Form 3) to ensure you have done

everythingforthatCBRReview.

CBRReviewI:BeginningofPhaseI

InitialAssessment(seesection9.6andForm1)

NeedsAssessment(seeChapter12andForm4)

Accompanytohealthcentre(seeForm2)

PrioritisePhaseIGoals(seeSection13.5andForm5)

RiskAssessment(seeChapter14andForm7)

RehabilitationPlan(seeForm8)

CBRReviewII:BeginningofPhaseII

NeedsAssessment(seeChapter12andForm4)

GoalsettingforPhaseII(seeSection13.5andForm6)

RiskAssessment

Accompanytohealthcentre

InvitetoFamilySupportGroup(seeChapter32)

RehabilitationPlan

CBRReviewIII:BeginningofPhaseIII

NeedsAssessment

GoalsettingforPhaseIII(seeSection13.5andForm6)

RiskAssessment


RehabilitationPlan

CBRReviewIV:At10-11months

ContinuingCareAssessment(seeSection9.12andForm9)

45


9.9 Whatcommunityworkisinvolved?

Ineverykebele, youneed to conduct the samecore tasks tomake linkswith thecommunity

(community engagement tasks). These should be completed around the time when the

individualsareinPhaseI(aroundthefirstthreemonths):

• Task1:Meetwithhealthextensionworker/s

• Task2:Identifykeycommunityleaders

• Task3:Identifykeycommunityresources

• Task4:Findoutwhatcommunityworkrelatingtomentalillnesshasalreadytakenplaceor

isplanned

• Task5:Meetingswithkeycommunityleaders

• Task6:Communityawareness-raisingevent/s

• Task7:Identifypotentialemploymentopportunitiesinthekebele

Dependingontheneedsof thepeoplewithschizophrenia,youmayalsoneedtoconductthe

followingtaskswhentheindividualsareinPhasesIIandIII:

• Task8:IndividualmeetingwithKebeleleaders

• Task9:IndividualmeetingwithEdirleaders

• Task10:Individualmeetingwithreligiousleaders

• Task11:Individualmeetingwithtraditionalhealer/holywaterpriest/attendant

• Task12:Individualmeetingwithliteracygroupleader

• Task13:Demonstrateprogressofclient/stocommunityleaders/widercommunity

• Task14:Communityawarenessraisingconsolidation

• Task15:Facilitateemploymentopportunitiesinthekebele

ThecommunityengagementworkshouldberecordedintheKebeleLogbook(Form10)

Yosef’sstory

BerhanisaCBRworkerwhoisaskedtolookafterYosefandhisfamily.Sherecordsherfirstvisit

toYosefontheInitialAssessmentForm.AtthenextvisitsheconductstheNeedsAssessmentto

gettoknowhissituationbetter.AspartofCBRReviewI,Berhanalsogoestothehealthcentre

withYosefandAddisa fewdays laterandsits inwhilstYosefseesthenurse.Thishelpsherto

understandhisillness.SherecordstheinformationontheHealthCentreContactForm.

46

9.10 HowdoyoudeliverCBR?

CBRManual

The rest of themanualwill tell youhow todeliver eachmoduleof CBR. Each chapter in the

manual covers a differentmodule. In each chapter youwill find the following questions are

answered:

• Whatistheproblem?

• Whydoesthisproblemhappen?

• Whyisitimportanttohelpwiththisproblem?

• Howcanwehelp?

Chapter31alsotellsyouhowtoconducttheCommunityEngagementtasks.

Step-by-stepguide

Thereisashortstep-by-stepguidetodeliveringeachmodule.Thesearedesignedtotakeonthe

homevisitstoremindyouofthemainthingstosayanddoforthemodule.

Structureofhomevisits

Eachhomevisitshouldcoverthefollowing

o Checktheirgeneralhealthandsymptoms

o Checkandrecordprogressrelatingtoongoinggoals

o Problemsolvingforongoinggoals

o Delivermodule/s:selectedonthebasisoftheremaininggoals

o Checkwhethertheyaretakingmedicationregularly

o Dobriefriskassessment(seeChapter14)

o Taskstocompletebeforethenextsession

o Plandateandcontentofnextsession

Recordinghomevisits

AllhomevisitsshouldberecordedontheHomeVisitForm(Form11).Youshouldalsocomplete

theVisit SummaryForm (Form12),whichasks for informationabout thepractical aspectsof

yourvisit,forexamplehowlongittookyoutogetthere.

Completingmodules

Youcan takeusemore thanonehomevisit tocompleteamodule.Sometimes,youmayalso

covermorethanonemoduleinonehomevisit.

Workload

47

Youshouldusuallydotwotaskseveryday.Forexampletwohomevisits,oronehomevisitand

onemeetingwithcommunityleaders.SeeForm13foranexampleofhowyourtimetablemight

look.

9.11 HowdoyouencourageindividualstotakepartinCBR?

Whenyouaregoingtomakeahomevisit,ifpossiblecallaheadthedaybeforeorwhenyouare

on your way to remind the individual or caregiver. During Phase III you should also call the

individualorcaregivertochecktheirprogresseverytwoweeks.Iftheindividualgoesmissingfor

a long period you should encourage the family and community members to look for the

individual,butyoushouldnotnormallysearchforthemyourself.

9.12 HowdoyouendCBR(continuingcareassessment)?

Ataround10or11monthsyoushouldconductCBRReviewIV.AtthisCBRReviewyoushould

discussthefactthatCBRwillsoonendwiththeindividualandfamily.Youshouldlookbackto

theGoalSettingFormsfromeachPhaseanddiscusstheprogressthathasbeenmadeoneach

goal. This should be a positive exercise, which focuses on the individual’s strengths and

achievements. It should not be a chance to make the individual feel that they have failed.

Around this timeyou shouldalsoattend thehealth centrewith the individual. Togetherwith

yoursupervisoryoushouldcompletetheContinuingCareAssessment(seeForm9).Theaimis

to identifyongoingneedsandto formulateanongoingplantoaddresstheseneedsonceyou

haveleft.Youshouldpreparetheindividualandfamilyforthepossibilitythatoldproblemswill

comebackorthatnewproblemsmayappear.Reassurethemthatthehealthcentrestaffwill

continue to look after the individual. At the final session theContinuingCare Plan should be

reviewedwiththe individualandtheircaregiver.Theymayfeelangryorupsetthatthehome

visitsareending.Remindthemthattheyhavelearnttodealwiththeirownproblemswhilstyou

havebeenworkingwiththem.

9.13 WhatdoyoudoifCBRisnotwanted?

Rarelytheindividualand/orfamilymaywishtostopparticipatinginCBRbeforetheendof12

months. This may make you feel shocked, upset or rejected. However we should not force

anyonetobeinvolvedinCBRiftheydonotwanttobe.Herearesomewaystodealwiththe

situation:

• Acceptwhatthefamilysaysanddon’ttrytoarguewiththem

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• Checkwhatthefamilyisunhappywithandtrytochangeit.Forexample,offertomeetthem

atthehealthpostinsteadofathome.

• ConsiderinvitinganindividualwhohasreceivedorisreceivingCBRtodiscussthebenefitsof

participatingwiththeindividualandfamily.

• Alwaysdiscussthesituationwithyoursupervisor

• Leaveyourcontactdetailswiththefamily.Sayyouarehappytocontinuewhenevertheyare

ready.

• Trytoarrangeafinalsessiontosaygoodbyeanddosomefinalwork-forexamplereminding

themwhattodoinanemergencysituation.

InsomecasesonlythecaregiverdoesnotwishtoparticipateinCBRoristoobusy,butthe

individual wishes to continue. When this happens you may continue to support the

individual,butonlyifyouandyoursupervisorhavenoconcernsaboutyoursafety.

9.14 Summary

• CBRaimstoimprovethelivesofpeoplewithschizophreniaandinvolvethemincommunity

life.Theprinciplesare:employaholisticapproach,workwiththefamilyandthecommunity,

encouragerespectforhumanrightsandlinktoexistingservices.

• ThefollowingpeopleareinvolvedinCBR:thepersonwithschizophrenia,thecaregiverand

family, theCBRworker, theCBR supervisor, thehealth centre staff, thepsychiatricnurse,

thecommunityleaderandcommunitymembers.

• CBRlasts12monthsforeachindividualandtakesplacethroughhomevisitsandmeetingsin

thecommunity

• CBRhas3phases.InPhaseItheaimistobuildarelationshipwiththeindividualandcover

the same Modules with everyone: Understanding Schizophrenia and its treatment,

Improvingaccesstohealthservices,Dealingwithhumanrightsissues,Preparingforacrisis.

• InPhasesIIandIIItheModulesdifferbetweenindividualsdependingontheirneeds.They

might include: supportwith takingmedication, improvingdaily functioning, improving the

family environment, getting back to work and community life, Dealing with stigma and

distressingsymptoms,improvingphysicalhealthandliteracy.

• The Community Engagement Work involves: Identifying community resources, engaging

with the health extension worker and community leaders, doing community awareness-

raisingandarrangingemploymentopportunities.

• YouwillsetupaFamilySupportGroupforfamiliestoprovidemutualsupport

49

• TheCBRmanualandStepbyStepGuidetellyouhowtodeliverCBR

50

10 Communicationskillsandproblemsolving

10.1 Whydoweneedcommunicationskills?

A lotofCBRtakesplace in the familyhomethroughdiscussionsbetweenyouandtheperson

withschizophreniaandtheirfamily.Forthesediscussionstogowellandbeusefulyouwillneed

certain skills in listeningand communicating.Although itmay sometimesbemoredifficult to

communicateclearlywithapersonwhohasschizophrenia,itisimportantthatyoualwaystreat

thepersonasaresponsibleandrespectedindividual.

10.2 Howtocommunicatewellwithfamilies

1. Befriendlyandunderstanding

Itisimportanttobewarmandfriendlytowardstheindividualsandfamily.Trytoputyourselfin

the place of the person you are talking to and feel what he or she could be feeling at the

moment,forexamplefrustrationoranger.The process willhelpyouto understandbetter the

situationof theperson.Youcanalso letthepersonknowthattheirfeelingsarecommonand

expectedforsomeoneintheirsituation.This isdifferentfromexpressingpitywhereyou only

expressthe factthatyoufeelbad fortheperson.Thisdoesnotmake theperson feel thathe

or she is being genuinely understood. Some ways to be understanding include: “I can

understandhowthewaypeoplehavebeentreatingyoumakesyoufeelangry”and“Youseem

tofeelupsettoday.”

2. Benon-judgemental

Youshould accept the person forwhoheor she is irrespective of religionandethnicgroup.

Thepersonhastherighttohisorherownviewsandfeelings.Evenwhenyoudonotagreeyou

shouldnot judgethepersonnegatively.

3. Berespectful

Beawareof theperson’sage,genderandculture.Youshouldmake them feel respected.Use

words that are easily understandable, and that the individual does not find distressing or

offensive,torefertoschizophreniaormentalillness.

4. Bepatient

51

The individual and the familymay take a lot of time to understand informationor tochange

theirbehaviour.

5. Encouragetrust

Respond sensitively if the individual or family tell you private or distressing information (for

example,regardingsexualviolence),andreassurethemthatyouwillnotdiscussthiswithother

membersofthecommunity.

10.3 Whatskillscanyouusewhencommunicating?

1. Showthepersonthatyouarelisteningtothem

Listencarefullytowhatthepersonwithschizophreniaissaying.Ifyoushowthepersonthatyou

arelisteningtheyaremorelikelytofeelcomfortabletosayhowtheyfeel.Youcandothisby:

• Keepingappropriateeyecontactwiththeperson

• Use body language.Make encouraging facial expressions and gestures. Sit facing the

personwithyourarmsunfolded.

• Don’tkeepcheckingyourwatchorphone.

• Keepyourphoneonsilentmode.Don’tansweritunlessitisyoursupervisor.Don’tread

orrespondtotextmessages.

• Keepyourvoicegentle.Speakslowlyandclearly.

• Don’tinterruptthepersonorignorewhattheyaresaying

2. Usequestioningskills

‘Open ended’ questions can be useful in getting the person to talk. They are questions that

cannotbeansweredinafewwordsorsentences.Forexample,“Couldyoutellmemoreabout

that?”and “How did you feelwhen that happened?”Trynottoputyourownviewintothe

question.Forexample,“Don’tyouthinkitwouldbehelpfulifyougotbacktowork?”Thismay

sounds judgemental and threatening. Instead you could say, “What do you think would be

helpfulforyou?”

3. Beobservant

Youshould be observant of the body languagethattheindividualuses.Forexample, if the

personhas a smile onher facebut hasher fists clenched or twisting her fingers vigorously

thismay indicateabuild-upof tension.

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4. Useencouragement

Usewordtoencouragethepersontocarryontalking,forexample“um”,“really”or“ahha”.

Nod your headandsmileattheperson. Sometimes just the repetition of a word leads to

the person giving further details. If the person says “My life is amess” you could reply “A

mess?”. This encourages the persontosay what she means.Youcanalso repeatback the

person’sstoryinyourownwords.Thisisusefultomakesureyouhaveunderstoodcorrectly,

andtoencouragethepersontotalkabouttheproblemindetail.

5. Noticethefeelingsoftheperson

Itcanbeusefultonoticethefeelingsofthepersonandshowthemwhatyouhavenoticed.This

helpsthemtofeelunderstood.Youmightnoticefeelingsthroughwhatthepersonsaysorhow

theyact.Forexample,ifthepersonsays“Iwassoangry thatI felt likehittinghim”,youcould

reply “Youmusthave been really angry”.Orifthepersonisbitingherlips,youcouldsay “You

seemvery worried today”.

6. Noticethepositivethings

Noticing the positive things and how the individual is improvingwill help to improve their

self-esteem. Forexample“You sayyouare unhappyaboutyourdaughter-inlawbeingrudeto

you... but it is good to hear that you have been enjoying time playingwith your grandson.”

However,trynottobeunrealisticortogivefalsehopeforthingsthatdefinitelywon’thappen.

10.4 Whatapproachesarenothelpfulwhenworkingwithfamilies?

• Tellingthepersonwhat tothinkordoormakingdecisions for them,withoutaskingthem

abouttheirexperiencesorideas

• Makingjudgementsonwhetherthepersonis‘good’or‘bad’

• Blamingthepersoniftheyhavedifficultychangingtheirbehaviour

• Makingpromisesthatyoucannotkeep

• Pretendingtounderstandwhattheymeanwhenyoudon’t

• Notrespondingwhenthepersontellsyousomethingsadordifficult

• Tellingthepersonaboutyourpersonalexperiences

• Usingoffensivewordsforschizophreniaormentalillness

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10.5 Problemsolving

Sometimespeoplewith schizophreniaand their caregivers find theirproblemsoverwhelming.

Worryingor thinking toomuchabout theirproblemscanmake them feel stress (seeChapter

23).Thisstressmayevenmaketheillnessworseorcausearelapse(seeSection2.4).Youcan

use problem solving to help individuals find ways around their problems. You can use this

methodfordifferenttypesofproblems,forexampledealingwithstigmaanddiscrimination(see

Chapter 28) or planning how to get back to farm work (see Chapter 27). People with

schizophreniamayhavemanyworriesorproblems.Trytofocusononeatatime.Picktheone

that relates to the module you are covering, or the one which is most important to the

individualatthattime.Onceyouhavedecidedwhichproblemyouaregoingtofocuson,follow

thesesteps:

1. Describetheproblem

• Discusstogetherwhattheproblemis

• Trytodescribeitintheclearestway

2. Thinkofpossiblesolutions

• Together,listasmanysolutionsaspossibletosolvingtheproblem.Sometimesyoumayneedyour

supervisor’shelptothinkaboutpossiblesolutions.

• Trynottothinkaboutwhetherthesearegoodorbadsuggestions

3. Discussthepossiblesolutions

• Discusseachpossiblesolutioninturn

• Foreachone,nowdecidetogetherwhetheritisagoodsuggestionornotuseful

• Foreachofthegoodsuggestions,discusstogetherthegoodandbadthingsaboutit.

4. Decideonasolution

• Decidewhichofthepossiblesolutionsisthebest.Alwayschecktheindividualishappywith

thissolution.

• Discussthestepbystepactionswhichareneededtocarryoutthesolution.

• Thinkaboutwhowillbeinvolvedandwhattheirroleswillbe

5. Carryoutthesolution

• Supporttheindividualandfamilytocarryoutthesolutionasyouhavediscussed

• Checkontheirprogressatlatersessions

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10.6 Confidentiality

Information that you gather during your workmust be kept secret from other people, even

fromthepatient’srelatives,unless:

• Thepatientgivespermissionforyoutodiscussitwiththem

• Itisessentialthatyoutellotherpeopleinordertoprotecttheperson.Forexample,ifyou

areworriedthepersonisatriskofsuicide(seeChapter14).

Theplaceswhereyoutalktopeoplewithschizophreniaandtheircaregiversshouldbearranged

insuchawaythatno-onecanlistentoyourprivatediscussions.Explainthatyouwon’ttellother

peopleaboutthethingsthattheytellyouunlessitisnecessaryforhelpingthem.Rememberto

askpermissionoftheindividualandcaregiverbeforediscussinganindividualwithacommunity

leaderorcommunitymember.Thiswillhelpinbuildingtrustbetweenyouandtheindividuals

youworkwith.

10.7 Summary

• GoodcommunicationbetweenyouandtheindividualandfamilyisessentialforCBR

• When working with families you should be: understanding, non-judgemental, respectful,

patientandencouragetrust

• The skills you can use include: listening and questioning skills, being observant, using

encouragement,noticingfeelingsandnoticingpositivethings.

• You can use Problem Solving to help individuals find practical ways around their problems

55

11 Creatingatrustingrelationship

11.1 Whatisatrustingrelationship?

A trusting relationshipmeans that there is a bondbetween you, the individual and family. It

meanstheindividualandfamilyspeakfreelyandsharetheirideasandconcerns.

11.2 Whyisitimportanttohaveatrustingrelationship?

Itisveryimportanttohaveatrustingrelationshipwiththeindividualandfamily.Thiswillhelp

theCBRinthefollowingways:

• Theindividualandfamilymembersaremorelikelytotellyoutheinformationyouneed

tohelpthem.Forexample,worriesaboutmoneyorfamilyconflict.

• Theyaremorelikelytolistentotheinformationyougivethem

• Theyaremorelikelytotrytheactivitieswhichyousuggest

• Theyaremorelikelytotaketheirmedicationregularly

• Theyaremorelikelytokeepreturningtothehealthcentre

• Theyhaveawayofexpressingtheiremotions

• Theyaremorelikelytobehopefulthatthingscanimprove

11.3 Howtoformatrustingrelationship

1. Introduceyourself

Whenyoufirstmeettheindividualandfamily,introduceyourself.Introduceyourselftoanynew

familymembersyoumeetatlatersessions.

2. Learnaboutthefamily

Try to learnasmuchaspossibleabout the individualandtheir familybeforeyoumeet them.

Findout fromthehealthcentrestafforHealthExtensionWorkerhow longthe individualhas

beenunwellandwhatproblemstheyhavehad.Whenyoumeetthefamily,trytounderstand

whoisinvolvedinthecareoftheindividualandwhohaspowerandinfluence.Youmayneedto

workwiththisfamilymember/stochangehowthefamilytreatstheindividual.

3. Focusontheproblemsthatareimportanttotheindividual

Listentowhattheindividualwantstochangeandhelpthemtoachieveit(seeChapter13).

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4. Keepeachsessionfocusedontheindividual

Nearthebeginningofeachsession,asktheindividual“Whatwouldmakethisahelpfulvisit?”or

“Whatwouldyou like to seedifferentafterourmeeting?” It isnotusuallyhelpful to refer to

yourownexperiences.

5. Getdetailedinformationfromtheindividual

Trytogetasmuchinformationaspossibleaboutthecurrentsituation,andanydifficultiesthey

have.Forexample,anindividualmaybedrinkingalotofalcohol.Onaskinghimforthereasons

fordrinking,hemaysaythisisduetofrequentquarrelsathome.Youcanthendiscusshowto

reducethequarrels,insteadofdrinkingtodealwiththeproblem.

6. Listentoideas,beliefsandconcerns

Listentothe ideasandbeliefsofthe individualwithout judgingthemortellingthemtheyare

wrong.Forexample,theindividualmayfindithelpfultomakeregularvisitstoholywater.Ifthis

isnotcausingharmyoushouldsupportthemtocontinue,evenifyoudonotbelievethatholy

watercancuretheillness.Youshould listentotheirconcerns.Forexample,eveniftheyhave

worriesaboutsideeffectsthatyouthinkaren’timportant,youshouldnotsimplydismissthem.

7. Treattheindividualwithdignityandrespect

Maketheindividualthecentreofyourattentionatalltimes.Treatthemwiththerespectyou

wouldwithanyotherperson,duringthesessionsandifyoumeettheminthekebele.Don’tuse

stigmatizing words like ‘mental’. Use non-stigmatizing words like problem and illness. These

actionswillhelptoimprovetheself-esteemoftheindividual.Theyalsohelptoreducestigma

anddiscriminationfromthefamilyandcommunitytowardstheindividual.

8. Stayneutralduringfamilydiscussions

Theremaybedisagreementswithinthefamilyonthebestwaytodothings.Trytostayneutral.

9. Keepclearboundaries

Youareaimingforacloseworkingrelationshipwiththeindividualandfamily.However,itisnot

appropriateforthemtointrudeonyourpersonallife.Thefamilyshouldnotvisityouathome.

However,itisfinetogreetthefamilyifyouseethemoutsidetheirhome.Itisfineforthefamily

57

togiveyouteaorcoffeewhenyouvisit,butitisnotnormallyallowedforyoutoreceivegifts.

Youshouldalsonotpayfortheindividual’sfoodormedicationyourself.

11.4 Challengeswithformingatrustingrelationship

Due to their illness people with schizophrenia sometimes find it more difficult to form a

relationshiporbondwithotherpeople.Youshouldalwayskeep trying.But this ispartof the

reasonwhyitisimportanttoalsomakeagoodrelationshipwiththefamily.

11.5 Summary

• Creating a trusting relationship between you, the individual and the family makes it more

likelythatCBRwillbehelpful.

• You can form a trusting relationship by: finding out about the family, keeping the sessions

focusedontheindividualandtreatingthemwithdignityandrespect,listeningtobeliefsand

concerns,andstayingneutralduringfamilydiscussions.

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12 NeedsAssessment

12.1 WhatistheNeedsAssessment?

Peoplewithschizophreniahavemanydifferentsortsofproblems.Someproblemswillbemore

importantforparticularindividualsandfamilies.Manyoftheseproblemscanbehelpedthrough

CBR.TheNeedsAssessment isanorganisedwayoffindingoutwhatproblemseachindividual

andfamilyarefacing.

12.2 Whydowedotheneedsassessment?

• TheNeedsAssessmenttellsuswhatproblemstheindividualandfamilyhave,andwhichare

themost important problems at that time. This helps us decidewhat improvements the

personwith schizophreniaand their familywould like towork towards first. This is called

GoalSetting(seeChapter13).ThishelpsustodecidewhichModulesofCBRtostartwith,

andwhichtoleaveuntillater.

• Doing the Needs Assessmentwill help the individual and family understand that you are

interestedintheirproblems.Thiswillhelpbuildatrustingrelationship(seeChapter11).

• It isalsousefultolookbackattheNeedsAssessmentattheendeachPhase.Thenwecan

seewhethertheproblemsthatthefamilyhadatthebeginningarestillthere,andwhatstill

needstobedone.

12.3 Whoisinvolvedintheneedsassessment?

TheNeedsAssessment should always involve you, , the individual and theprimary caregiver.

YoursupervisorshouldbeinvolvedatthebeginningofPhaseIandmaybeinvolvedinPhaseII

andIII.Youmayincludeothermembersofthefamilywhoareinvolvedintheindividual’scare.

AroundthetimeoftheNeedsAssessment,youshouldaccompanytheindividualtothehealth

centreforareviewbythenurseorhealthofficer.Byobservingwhatthenurseorhealthofficer

saysyouwill getextra informationabout theneedsof the individual. Theremaybedifferent

viewsaboutwhatthemostimportantneedsare.Forexample,theindividualmayfeelthemost

urgentneed is to getback to farmwork. The familymay feel that the symptomsneed tobe

underbettercontrolfirst.Atthisstageitisimportanttogetallthepointsofview.InChapter13

youwilllearnhowtosetgoalsfortheindividualtogetherwiththefamily.

12.4 Whenistheneedsassessmentdone?

TheNeedsAssessmentisdonethreetimesduringCBR,atCBRReviewsI,IIandIII.

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12.5 Howdowedotheneedsassessment?

You will use a detailed checklist to assess whether there are problems in the areas where

peoplewithschizophreniausuallyhavedifficulties.

UsingtheNeedsAssessmentform

TheNeedsAssessmentForm(Form4)coversthefollowingareas:

• Understandingschizophrenia

• Accessinghealthservices


• Humanrightsissues

• Symptoms

• Takingmedication

• Sociallife

• Familylife

• Dailyfunctioning

• Work

• Empowerment

• Literacy

Youshouldgothrougheachpotentialneed in turnandask the individualand familywhether

theyhaveanyproblemsinthisarea.Forexampletoassesssociallifeyoucouldsay,“Sometimes

peoplewithschizophreniahaveproblemsdoingtheactivitiesinthecommunitythattheyusedto

do,orthatotherpeopletheiragedo.Forexample,beingpartofanEdirgroup,goingtokebele

meetingsorbeingpartofamahabergroup.Haveyouhadanyproblemswithdoingthesesorts

ofactivities?”

Usingobservations

Youandthesupervisorcanalsouseyourownobservationsaboutwhattheproblemsare.For

example, youmay notice that the individual is very drowsy (whichmight be a side effect of

medication),orthatafamilymemberoftenshoutsattheindividual.

Recordingtheneedsassessment

Markontheassessmentformwhethereachpossibleneedis:

60

• Not a problem for this person (everyone agrees there arenoproblems). For example, an

individualrememberstotaketheirmedicationeverydaywithoutbeingreminded.

• A partially met need (there are a few small problems). For example, an individual

occasionallydoesnotgotochurch,eventhoughtheywouldliketo.

• An unmet need (there are problems). For example the individual does not do any of the

farmworkthattheyusedtodo.

For each need write some comments about what you have been told and what you have

observed.Include:

• Detailedinformationontheneed.Forexample,whattypeofworktheindividualwouldlike

todoorwhatself-caretasksaremostdifficult.

• How long this has been a problem. For example, the individual may have had difficulty

socialisingforalongtime,buttheremaybenewmedicationsideeffects.

• Howimportantthisneedisfortheindividual.Thiswillhelplaterwhengoalsetting.

• If this is the second Needs Assessment, record what progress has been made since the

previousneedsassessment.

Assessingpersonalneeds

Inadditiontothechecklistyoushouldalsoasktheindividualandfamilytotellyouaboutany

otherproblemsorneedsthathavenotbeencovered.Theseareknownas‘personalneeds’and

youshouldrecordthemontheneedsassessmentform.

12.6 Tipsforcompletingtheneedsassessment

• Someindividualsandfamilymembersmaystartbysayingthattheyhavenoproblems.Itis

importanttogentlycontinueaskingfordifficulties.Youmayneedtocomebacktosections

onthechecklist.Sometimesyouwillneedmorethanonehomevisittocompletetheneeds

assessment.

• Whenyouaskeachquestion,thinkaboutwhat is likelytobeusualforthat individual.For

example, if youngwomendonotusually attend the kebelemeetings, then itmaynotbe

appropriatetoaskaboutproblemswiththis.

Yosef’sstory

AtReviewII,BerhandoestheNeedsAssessmentwithYosefandhisfamily.Haile,hersupervisor,

isalsothere.SherecordseverythingontheNeedsAssessmentForm.

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• It is likelythatthe individualandfamilywillaskyouquestionsaboutthe illnesswhilstyou

aredoingtheneedsassessment.Youshouldbereadytoanswersomequestions,butremind

themtherewillbeachancetodiscussthesethingsinmoredetaillater.

12.7 Whatdowedowiththeinformationfromtheneedsassessment?

InPhaseI,wedotheNeedsAssessmenttohelptogettoknowtheindividualandthefamily.In

PhasesIIandIIIweusetheinformationforGoalSetting(seeChapter13).

12.8 Summary

• WedoaNeedsAssessmenttounderstandwhatproblemstheindividualhasandtodecide

whichpartsofCBRtostartwith

• Weconducttheneedsassessmentbyaskingquestionstotheindividualandfamily,making

observations,andattendingthehealthcentrewiththeindividual

• On the Needs Assessment Form you should record whether each possible need is not a

problem for this person, an unmet or partially met need.

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13 GoalSetting

13.1 WhatisGoalSetting?

Goalsettingisaboutdecidingtogetherwhichneedstoaddressandinwhichorder.Itshouldbe

apositiveprocess,notonethatmakestheindividualfeelhelplessorafailure.

13.2 WhydoweneedtodoGoalSetting?

Goalsettingis importantsothattheindividual,family,youandyoursupervisorallknowwhat

youareworkingtowards.Thiscanhelpindividualstorecovermorequickly.Goalsettingmakes

surethattheCBRModulesthatyoudowitheachindividualaretherightonesforhimorher.

Goalsettingalsogivesasenseofachievementandprogresswhenagoalisachieved.

13.3 WhoisinvolvedinGoalSetting?

Goal setting should always involve you, the individual and the primary caregiver. You may

involveothermembersofthefamilywhoareinvolvedintheindividual’scare.Yoursupervisor

shouldbeinvolvedatthebeginningofPhaseIandmaybeinvolvedinPhaseIIandIII.

13.4 WhendowedoGoalSetting?

WedoGoal Setting as part of theCBRReviews at thebeginningof eachPhase.Goal Setting

shouldalwayscomeaftertheNeedsAssessment.

13.5 HowdowedoGoalSetting?

PhaseI

PhaseIisaboutmakingsureallindividualshavetheirbasicneedsmet.Eventhoughyoumight

havefoundoutaboutlotsofdifferentproblemsontheNeedsAssessment,duringPhaseIyou

shouldfocusonbasicneeds.ThepotentialgoalsforPhaseIaretherefore:

• Individualandcaregiverhavebeeninformedofwhatschizophreniais,availabletreatments,

andthepotentialforrecovery

• Individualisabletoaccessmedicationandattendhealthcentreformentalhealthas

indicatedbyclinicalstatus

• Crisismanagementplanisinplace

• Individualisnotchainedorrestrained

Notallindividualswillhaveproblemswiththesebasicneeds,sonoteveryonewillneedtoseta

goalaroundallofthem.TheorderinwhichyouaddressthePhaseIgoalswillalsodependon

63

the situation of the individual. For example if an individual is currently chained, you should

usually address the goal ‘Personwith schizophrenia is not chainedor restrained’ first, before

going on to the other goals. You should work together with the individual, family and your

supervisortodecidethebestordertoaddressthegoals.OnthePhaseIGoalSettingform(Form

5),youshouldmakenotesaboutthemostimportantgoalstoaddressfirst.Addatimeframefor

howlongyouexpect ittotaketoachievethegoal. Inadditiontothesecoregoalsyoushould

also ask the individual if they would like to set a personal goal. You should fill in the

RehabilitationPlan(Form8)tosummarisetheinformationfromtheInitialAssessmentandGoal

Setting. This form should be filled in using simple language that the family can understand.

Makeacopyoftheformfortheindividualandfamilytokeep.

PhaseII

In Phase II, all the goals are based on the particular needs of the individual and family. This

means they will differ from individual to individual. To set the Phase II goals you should go

through the list of needs that you marked as ‘Partially met’ or ‘Unmet met’ on the Needs

AssessmentyoucompleteaspartofCBRReviewII.Thenumberofgoals forPhase IIwillvary

betweenindividualsbutshouldnotbemorethanfiveorsix.Thedecisionaboutwhichgoalsto

focus on should bemade together with the individual, family, you and your supervisor. You

shouldalsodecidewhichgoalstofocusonfirst,andhowlongyouexpectitwilltaketoachieve

each goal. You can continueworking on Phase I goals if you feel ongoingwork is needed to

maintainthesituation.Youshouldencouragediscussionaboutthefollowing:

• Whichgoalsaremostimportanttotheindividualandwhy?

• Whichgoalsaremostimportanttothefamilywhy?

• Whichgoalsneedtobeachievedfirstbeforeothergoalscanbeachieved?Forexample,the

individualmayhaveproblemsrememberingtotaketheirmedication.Astheystillhave

manysymptomsthismaybethereasonwhytheyalsohavedifficultieswithself-careand

sociallife.Youmayagreethatitisimportantforthepersontostarttakingtheirmedication

regularly,beforemovingontoaddressingself-care.

• Whichgoalsarerealistic?

Yosef’sstory

AtReview I, Berhan doesGoal SettingwithYosef andhis family.Haile, her supervisor, is also

there.SherecordseverythingontheGoalSettingForm.

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OnthePhaseIIGoalSettingform(Form6),youshouldtickoffthegoalsyouhavechosen,and

makenotes about themost important goals to address first. Include informationonwhy the

familywantstofocusonthosegoalsfirst.Youshouldadddetailsonwhatyouhopetoachieve.

Forexample,ifthegoalis‘Individualhasgoodself-care’youcouldaddtheparticulartasksyou

aretryingtoimprove,suchasgettingwashed.Atanytimeyoumaybeworkingtowardsseveral

goals at once. You should also discuss the personal goal set in Phase I, and either continue

workingtowardsthisorsetanewpersonalgoal.Recordanypersonalgoalsontheform.Once

again,youshouldsummarisethe informationfromgoalsettingbyupdatingtheRehabilitation

Plan(Form8).Makeacopyoftheformfortheindividualandfamilytokeep.

PhaseIII

SettingandprioritisinggoalsinPhaseIIIshouldfollowthesameprocessasPhaseII.However,in

Phase III you should focus on maintaining the improvements made in Phase III, rather than

starting to work on lots of new areas. The number of goals for Phase III will vary between

individualsbutshouldnotbemore thanthree.Unless theyhavealreadyachievedthegoal in

PhaseII,allindividualsshouldhavethefollowinggoal:

• Individualhasrelapsepreventionplaninplace

OnthePhaseIIIGoalSettingform(Form6),youshouldtickoffthegoalsyouhavechosen,and

makenotesaboutthemostimportantgoalstoaddressfirst.Summarisetheinformationonthe

RehabilitationPlan(Form8).

13.6 WhatdowedowiththeinformationfromGoalSetting?

EachgoalhasaspecificModuleconnectedtoit.Ifanindividualisworkingtowardsagoal,then

you should complete the connectedModule at somepointduring thePhase.More thanone

goal may be addressed by the same module, so you can try to work on these linked goals

aroundthesametime.Evenifyouareonlytryingtoachieveonegoallinkedtoamodule,you

shouldnormally complete thewholemodule.However, you should tailor themodule tohelp

with the specific problems that the individual faces. Remember the focus is on supporting

individualstoachievethegoals,notjusttocompletethemoduleasfastaspossible.

Yosef’sstory

AtReview II,BerhandoesGoal SettingwithYosefandhis family.Haile,her supervisor, isalso

there.SherecordseverythingontheGoalSettingForm.

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PhaseI

InPhaseIeveryoneshouldcompletethesameModules,eveniftheyhaven’tsetaspecificgoal

relatingtothemodule.Thesemodulesare:

• Understandingschizophreniaanditstreatment

• Improvingaccesstohealthservices

• Addressinghumanrightsissues


However the order of the Modules should be decided depending on the situation of the

individual. The Initial Assessment will help you to decide this. How long you spend on each

Module will also depend on the individual. For example, if an individual has a good

understandingofschizophrenia,isnotchainedortiedup,andregularlyaccesshealthservices,

theymayonlyneedoneortwohomevisitstocompletealltheseModules.Oryoumayneedto

spendmanymorehomevisitswithsomeonewhodoesnotaccesshealthservicesandwho is

currentlysufferingseveresymptoms.

PhasesIIandIII

OnceyouhavedecidedwhichgoalstofocusoninPhasesIIorIII,andinwhichorder,youshould

thennoteanddiscusswhichmodulesareneededtoachievethesegoals.Thisshouldbeeasy,as

eachgoalhasarecommendedmodulelinkedtoit.ThesearelistedonthePhaseIIandIIIGoal

Setting forms. On the forms you can also write other actions that you think might help to

achievethegoal,butwhicharen’tinthemodule.AsinPhaseIthelengthoftimetocomplete

eachModulewillvarybetweenindividuals.

13.7 Howdoweknowifgoalsareachieved?

Youshouldalwaysbethinkingaboutwhichgoalstheindividualisworkingonatthemoment.At

eachhomevisityouwillcheckandrecordtheprogressofeachofthecurrentgoalsusingthe

HomeVisitForm(Form11).Onthisformforeachgoalyourecord:

• Themodule/syouarecurrentlyworkingonwhichrelatetothatgoal

• Anycommunityengagementworkorotheractionsunderwaywhichrelatetothatgoal

• Anyissuesorproblemsrelatingtothegoal

• Whetherthegoal isachieved,partiallyachievedornotachievedbytheendofthehome

visit.

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InPhases II and III agoal isnormallyonlyachievedwhen there isa change in thebehaviour,

actions or experiences of the individual or family. You should ask the individual and family

whether they feel thegoalhasbeenachieved. Youwill alsomeetwith your supervisorevery

twoweekstodiscusstheprogressofeach individual (seeChapter34).At thesemeetingsyou

shoulddiscusswhethereachof thegoalsyouareworkingonhasbeenachievedyet.There is

not a fixed timewhen any of the goals should be achieved by. In your discussions with the

family you should focuson thepositive things. Trynot tomake the individual feel theyhave

failedif ittakesalongtimetoachievethegoal.OnceagoalisachievedtickitoffontheGoal

SettingForm.

13.8 Whendowemovetothenextphase?

MovingfromPhaseItoPhaseII

Once all the Phase I goals have been achieved, you should arrange CBR Review II with the

individual, family, youandyour supervisor. If the individual isnot ready forCBRReview IIby

about2months,youandyoursupervisorwillreviewthesituationtogether.Theremaybeone

ormoregoalthatyou,yoursupervisor,theindividualandfamilyagreemayneverbeachieved

despitethebesteffortsofyouall. Ifthishappens,withthepermissionofyoursupervisor,the

individualcanmoveontoPhaseIIwithouthavingachievedthatgoal.Youshouldhoweverstill

continuetosupporttheindividualtoachievethegoalduringPhaseII.Itisnotnecessarytohave

achievedthepersonalgoalbeforemovingontoPhaseII.Yoursupervisorwillbemonitoringthe

progressofeachindividual.

MovingfromPhaseIItoPhaseIII

Once all the Phase II goals have been achieved, you should arrange CBR Review III with the

individual,family,youandyoursupervisor.IftheindividualisnotreadytomovetoPhaseIIIby

about8months,youandyour supervisorwill review thesituation together. If there isagoal

thatyouagreemayneverbeachieved,youcanmoveontoPhase IIIwithouthavingachieved

thatgoal.

Yosef’sstoryAteachvisitBerhanfills inahomevisit form,whichkeeps trackof thegoalsYosef isworkingtowards.

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13.9 TipsforGoalSetting

• Remember to choose realistic goals with the individual and family. For example, if the

individual is still unwell at the beginning of Phase II, it may be better to choose ‘Taking

medication’insteadof‘Gettingbacktowork’asagoalatthisstage.

• Remindthe individualthat justbecauseagoalhasnotbeenchosenatthisstagedoesnot

meanitwillneverbeaddressed.Youcanaddgoalslater,forexampleinPhaseIII.

• Ifaparticulargoalhasnotbeenachievedyet,keepfocusingontheprogressmade.

• Remember that if you, your supervisor, the individual and family agree that a goal may

neverbeachieved,itisacceptabletomoveontothenextPhaseanyway.

13.10 Summary

• WedoGoalSettingtodecidewhichneedstoaddressandinwhichorder,andtofollowthe

progressoftheindividual

• In Phase I the Goals are the same for everyone. You should decide the order to address

thembydiscussingwiththefamilyandrecordingonthePhaseIGoalSettingForm

InPhases IIand III theGoalsaredifferent foreach individual.Youshouldchoosenomore

thanfiveorsixgoalstofocusonineachPhaseandrecordthemonthePhaseIIorIIIGoal

SettingForm

• ThegoalsyouchoosewilltellyouwhichModulestodeliver

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14 Riskassessment

14.1 Whatrisksdopeoplewithschizophreniaface?

Suicide

Peoplewithschizophreniaareabouttentimesmore likely tocommitsuicide (kill themselves)

than other people. Suicide is therefore quite a common cause of death in people with

schizophrenia. Themost commonways people commit suicide in rural Ethiopia are hanging,

drowningandswallowingpesticidesorchemicals.

Attemptedsuicide

Attempted suicide iswhere someone tries to kill themselves but does not succeed. This is a

serious warning sign that the person needs urgent help. Suicide attempts are much more

common than suicide, where people succeed in killing themselves. Young women are most

likely to attempt suicide in Ethiopia. People who have attempted suicide are more likely to

commitsuicidelater.

Chainingandtyingup

Peoplewith schizophreniaarequitecommonly tieduporchainedup fromtime to time.This

may take place at the family home, or sometimes at a holywater site or traditional healer’s

home.Thepersonmaybetiedupforaperiodofdaystoweeks,orsometimesmonthstoyears.

SeeChapter7.

Physicalabuse

Peoplewithschizophreniamaybebeatenby familymembers.Sometimes theyarebeatenby

holywaterpriestsorattendantsortraditionalhealersaspartofthetreatment.SeeChapter7.

Emotionalabuse

People with schizophrenia may be treated badly even without being physically abused. For

example,theymaybeshoutedatortreatedinanundignifiedway.Thismaytakeplacewithin

thehomeoroutside.

Sexualviolence

Peoplewithschizophreniaareparticularlyvulnerabletosexualviolence,forexamplerape.This

mayhappenwithinoroutsidethefamilyhome.

Neglect

Sometimespeoplewith schizophrenia are not given enough food, or don’twear any clothes.

Sometimestheyarehomelessandhavenoshelter.SeeChapter7.

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Riskstochildren

Children who live in a household where a person has schizophrenia may be vulnerable to

neglectorabuse.Thismayhappenbecauseaparent (eitherwith the illnessoracaregiver) is

unabletolookafterthechildproperlyduetoburdenonthefamilyduetotheillness.

Environmentalrisks

Sometimespeoplewithschizophreniaarenotabletolookafterthemselvesaswellasnormal.

Thiscanresultinthembeinghitbycars,fallingoffbuildingsorbeingattackedbywildanimals.

Imprisonment

Somepeoplewithschizophreniagetinvolvedwiththepolice,particularlyiftheyarebehavingin

adisruptiveway,andmayendupimprisonedinajail.

14.2 Whydoweneedtoassessriskinpeoplewithschizophrenia?

Onceweknowthe risks individualsare facingwecan takeaction to try to reduce the risk. In

somecaseswemaysaveanindividual’slife.Inothercases,wemayimprovetheirsituationso

theyhaveabetterqualityof lifeandfinditeasiertogetbacktousualactivities. It isnottrue

that asking about suicidal ideas introduces the idea in the person’s mind. Instead, asking

whetherthepersonhasexperiencedsuicidal ideas is theonlyway to identify risk andprovide

thenecessaryhelptopreventsuicide.

14.3 Howdoweassessriskinpeoplewithschizophrenia?

Inyourworkwithindividualsandfamiliesyoumaybecomeawarethattheindividualisatriskin

differentways,justbylisteningtothemandobservingtheirsituation.Belowyouwillfindsome

specificthingsthatwillhelpyouknowthattheindividual isatrisk. Inaddition,ateveryhome

visityoushouldsensitivelyaskquestionstocheckforsuicideriskandchainingorrestraint.At

each CBR Review your supervisor will do a full risk assessment by asking questions to the

individualandfamily.Youshouldalsobepresentandcontributewhereyoucan.Itmayfeelvery

sensitivetoaskaboutthesetopics.Youcanstartbysaying,“Ineedtoaskyousomequestions

whichmight be difficult or sensitive. Before we start I want to let you know that these are

routinequestionthatweasktoeveryone.”

Suicide

Youshouldasksomequestionstoassesssuicideriskateveryhomevisit.Onewaytostartasking

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about this is: “How do you feel about life at the moment?” If the individual does not say

anythingverynegative,youcancarryonwiththehomevisitasusual.Iftheindividualsaysthat

they are feeling very negative, or things are going very badly, you should ask some more

questions, such as “I can see you are going through a very difficult period. In your situation,

somepeoplemightfeelthatitisnotworthcarryingonwithlife.Haveyoueverfeltlikethatsince

Ilastsawyou?”

Oryoucanuseotherwaysofaskingthequestion,forexample,

“Haveyoufeltitwouldbebetterifyoudidnotwakeupinthemorning?”

“Haveyoufeltitisnotworthcarryingonwithlife?”

“Have you felt that yourproblems in lifeare toodifficult tobe solvedand that youwouldbe

betteroffdead?”

Iftheindividualsaysyestoanyofthesequestionsyoushouldaskthem,“Have youmade any

plansforharmingyourself?”Thiswillhelpyouknowhowserioustheriskis.

Thefollowingthingsmayalsoindicatetheindividualisatriskofsuicide:

• Anyreferencetodeathordying,inverbalorwrittenexpressionorastrongfocusonan

individualwhocommittedsuicide

• Notbeingwillingtodiscussthetopicandseemingdistressed

• Anystatementsthat“lifeisnotworthliving”

• Impulsiveandpotentiallydangerousbehaviour.Forexampledrinkingalcoholorusingkhat.

Iftheindividualtellsyoutheyhavethoughtaboutsuicide,listencarefullyandrespond

sensitivelyusingyourcommunicationskills(Chapter10).

Chaining

You should assess for chaining at every home visit. It may be obvious that the individual is

chainedoryoumaynoticewoundsorsoresontheindividual.Ifitisnotobviousyoucancheck

byasking:“SinceIlastsawhaveyoubeenchainedorrestrainedathome,ataholywatersite,or

byatraditionalhealerorbyanyoneelse?”

Physical,emotionalorsexualabuseinsideoroutsidethehome

Youmaynoticesignsofphysicalinjurysuchasbruisesorcuts.Youmaynoticethatafamily

membertreatstheindividualinanabusiveway.

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Neglectandnoteatingordrinking

Youmaynoticetheindividuallooksverythinormalnourished,orthattheyarenotwearingany

clothes.

14.4 Howdowerespondwhenwefindtherearerisks?

RecordanyrisksyoufindontheHomeVisitForm.Followthesesteps.

1. Findoutiftherewereanyparticularcircumstancesorfactorsleadingtotherisk.

2. Discusswithyoursupervisor,thefamilyandindividualimmediateactionsthatwouldbe

helpful.

3. Followtheflowchart(Chapter35)forthesituation.Itwilltellyouthespecificstepsyou

needtotake.Thestepsforsuicideriskandchainingarealsogivenbelow(section14.5).

4. Discusswithyoursupervisor,thefamilyandindividualstepstoreducetheriskinfuture.

5. Followupateveryvisittocheckthesestepshavebeentaken,andiftherehavebeenany

furtherproblems.

14.5 Howdowedealwithsuiciderisk?

Inadditiontothegeneralsteps(Section14.4),ifyouidentifyariskofsuicideyoushouldalways

followthesesteps:

• Checktheindividualistakingtheirmedicationandifnotencouragethemtodoso

• Facilitateaccesstothehealthcentreassoonaspossibleforareview.FillinaHealthCentre

ReferralForm(Form14).

• Informyoursupervisorimmediately,iftheyarenotalreadyaware.

• Iftheindividualdoesnotattendedthehealthcentreafteroneday,makeajointhomevisit

withyoursupervisor.

• Atthishomevisityouandyoursupervisorshoulddiscusswiththefamilyandtheindividual

(ifpossible)thereasonswhytheyhavenotattended.

• Trytoaddressthesereasons,forexample:

o Reiteratetheimportanceofreceivingtreatmentforimprovingsymptoms

o Mobilisecommunityleaderstohelptheindividualtraveltothehealthcentre

o AlsoseeChapter17AccessingHealthServices

• Yoursupervisorwilldoamorein-depthassessmentofsuiciderisk

• YoursupervisorwillthengivediscusstheriskassessmentwiththePsychiatricNurse

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• Iftheindividualstillhasnotattendedthehealthcentrewithin2days,andtheTrial

PsychiatricNursethinkstheindividualisathighrisktheywillthendoahomevisittoreview

thesituationandimprovethetreatment.

14.6 Howdowedealwithriskofchainingorrestraint?

Inadditiontothegeneralsteps(14.4), ifyou identifyan individualwho ischainedyoushould

followthesesteps(seeChapter19formoredetail):

• Tellyoursupervisorimmediately.

• Checktheindividualistakingtheirmedicationandifnotencouragethemtodoso

• Facilitateimmediateaccesstothehealthcentreforaclinicalreview.FillinaHealthCentre

ReferralForm(FormU).

• Iftheindividualisstillchainedandtheyhavenotattendedthehealthcentreafteroneweek,

makeajointhomevisitwithyoursupervisor.



• Trytoaddressthesereasons


youshouldinformtheTrialPsychiatricNurse.Theymaydoahomevisittoreviewthe

situationandimprovethetreatment.

14.7 Summary

• Weassessriskstofindoutwhatrisksanindividualfaces,sowecantakeactiontoprotect

them

• YoursupervisorwilldoafullriskassessmentateveryCBRReview.Youshouldasksensitive

questionsaboutsuicideriskandchainingateveryhomevisit

• Whenariskisidentifiedtherearecertainstepsyoushouldfollow.Usuallythisisreferringto

the health centre and informing your supervisor, if they are not aware yet.

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15 Beingawareofthecaregiver’sneeds

15.1 Whatproblemsdocaregivershave?

AswelearntinChapter5,whensomeonehasschizophreniathiscanputaburdenonthewhole

family.Often theburden fallsononeperson inparticular.Thismaybe the spouse,parentor

child.Itisoften,butnotalways,afemalecaregiverwhotakesmostoftheresponsibility.Female

caregivers may be less likely to get support from other family members or people in the

community. Sometime the stress on this person is so great that they become unwell

themselves.Thecaregivermaydevelopdistress,depressionoranxiety.Someofthesignsofthis

arewhenthecaregiver:

• Complains of many physical symptoms but no physical cause has been found (e.g.

headache,burningsensations,achesandpains)

• Haslowenergy;isalwaystired;hassleepproblemsordoesnotwanttoeat

• Alwaysseemssadoranxiousorirritable;feelshopelessorhelplessorguilty

• Haslowinterestorpleasureinactivitiesthatusedtobeenjoyable

• Worriesorthinksaboutday-to-dayproblemstoomuch

• Isnotableormotivatedtodotheirusualjob,houseworkorsocialactivities

• Hasbeenthinkingofharmingthemselves,e.g.endingtheirlife

15.2 Whyisitimportanttothinkaboutthecaregiversneeds?

Caregivershavetherighttobehealthy,justlikepeoplewithschizophrenia.Also,ifthecaregiver

becomesunwelltheywillnotbeabletolookafterthepersonwithschizophreniaverywell.

15.3 Howshouldwestayawareofthecaregiver’sneeds?

Unlikeforthepersonwithschizophrenia,youdonotneedtodoafullneedsassessmentwith

thecaregiver.However,ateveryhomevisityoushouldthinkabouthowthecaregiverseemsto

begettingon.Caregiverswhoare female,elderly, isolatedor suffering fromaphysical illness

aremorelikelytosufferfromthestressofcaregiving.Lookoutforanyofthesignsthattheyare

distressedordepressed(section15.1).Ifyounoticeanyofthesesignstakethesesteps:

• Ifpossible,trytotalktothecaregiverbythemselves,withouttheindividualpresent.Ifyou

do this, you may need to explain to the individual that you are not talking about them

behindtheirback.Explainthatyoujustwanttocheckhowthecaregiverisdoing.

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• Askthecaregiverhowtheyfeeltheyarecopingandlistentotheirexperiences.Askifthey

haveanybodytheycanturntoforsupport,forexamplearelativeorneighbour.

• Tellthemitissometimesusefultodiscusstheirproblemswithsomebodyelse.Justbydoing

this,thingscanfeeleasier.

• Iftheyarenotalreadydoingso,encouragethemtojointheFamilySupportGroup(Chapter

32)

• Ifpossible,involvetheothermembersofthefamily.Speaktothemandshareyourconcerns

aboutthestressonthecaregiver.Discusshowtheycantakesomeoftheresponsibilities

• Ifyouareveryworriedaboutthecaregiver,youshouldsuggestthattheygotothehealth

centreforareviewwiththenurseorhealthofficer.Youshouldalsotellyoursupervisor.

15.4 Summary

• Caregivers can become unwell through the stress of looking after a person with

schizophrenia.Itisoftenfemalecaregiverswhotakeonmoreresponsibility.

• They may have physical symptoms, low energy, be very worried, or consider harming

themselves

• Ask the caregiverhow theyare coping. If youare concerned try toensure theygetmore

support, for example from friends and family.

Yosef’sstory

Berhannotices thatAddis sometimes seemssadanddistressed. Sheoften soundshopeless

aboutYosef’ssituation.AddisagreestotalktoBerhanalone.TheybothreassureYosefthat

they are not talking about him behind his back. Addis tells her problems to Berhan. She

admitssheoften feelsunhappyandstressed.Addisagrees to shareherproblemswithher

cousin,whoshetrusts.Addis isalsointerestedinjoiningtheFamilySupportGroupwhenit

getssetup.

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16 Module:Understandingschizophreniaanditstreatment

16.1 What problems do people with schizophrenia and their families have with

understandingschizophrenia?

Manypeoplewith schizophreniaand their familiesdonot knowverymuchabout the illness.

Somecommonbeliefs,whicharenottrue,include:

• Noonewithschizophreniawillimproveorgetwell

• Medicationcancompletelycuretheillness

• Schizophreniaiscausedbyspiritpossessionorevileye

Mostoftheseincorrectbeliefsarenotharmfulbythemselves.However,somecanbeunhelpful.

Forexample,iftheindividualandfamilybelievetheillnesswillneverimprove,theymaymake

less effort to support the person. On the other hand, if they believe the medication will

completely cure the illness, they may be disappointed when it takes a while to see

improvements.Theindividualmaythenstoptakingthemedicationaltogether.

16.2 Whydopeoplewithschizophreniaandtheirfamilieshaveproblemswithunderstanding

schizophrenia?

People with schizophrenia and their families may have little understanding of schizophrenia

because there was no information available to them. Even if they have been to the health

centre,thenurseorhealthofficermaynothavehadtimetogivetheinformationproperly.

Peoplemayfindtraditionalbeliefsmakesenseandthattraditionalpracticesarehelpful.

16.3 Whyisitimportanttogiveinformationaboutschizophrenia?

Peoplewithschizophreniaandtheirfamilieshavearighttohaveinformationabouttheirillness.

However,thisdoesnotmeanweshouldforcethemtobelieveallofthe informationtheyare

given.Peoplecanhavelotsofdifferentbeliefsatonce.Havingacertainbelief,suchasthatthe

illness iscausedby thedevil,doesnotalwaysstoppeople takingcertainactions, forexample

takingmedication.

Ifpeoplehavemoreinformationaboutschizophrenia,theymayfeelmorepositiveabouttheir

illnessandthatthingsmayimprove.Withthisattitude,theindividualandfamilymaybemore

likelytotakeactivestepstohelprecovery,includingparticipatinginCBRmorefully.Themore

active steps individualsand familiesmake, themore likely theyare togetback to theirusual

activities.

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16.4 Howdowegiveinformationaboutschizophrenia?

1. Usetheseprinciplesforgivinginformation

Giving information about schizophrenia is an ongoing process. You will need to remind the

individual and family about information you have already given them. Also, the issues the

personfaces,andthereforetheinformationtheyneed,willchangeastimegoeson.Itislikely

thatyouwillinvolveotherfamilymembersapartfromtheindividualandtheprimarycaregiver

whenyougive informationaboutschizophrenia.Whoyouinvolveshouldbedecidedbetween

you,theindividualandthecaregiver.Trytoincludethosefamilymembersthathavepowerand

influencewithinthefamily,alongwiththosewhoarehelpingtolookaftertheindividual.Here

aresomegeneraltipsongivinginformationaboutschizophrenia:

• Givetheindividualandfamilytimetoaskquestionsandpauseaftereachsection

• Encouragethefamilytotellyouiftheydisagreewiththe information

• Bepreparedtodiscussandclarifythe informationwiththefamily.

• Avoidover-loadingthefamilywithtoomuchinformationormedicalterms.

• Use examples fromwhatyouknowaboutthe individual

• Listenandunderstandthefamily’sviewof the illness.

• Besensitivetoanydistressingexperiencesofthefamilymembers

• Tellthefamilyifyoudonotknowtheanswerstotheirquestions.Beforethenextsession,

makesureyoufindouttheanswerbytalkingtoyoursupervisororlookingupthe

informationinthismanual.

2. Explainwhyyouaredoingthismodule

Tellthemwhywouldliketogivetheminformationaboutschizophrenia

3. Assessunderstandingaboutschizophrenia

• Tobeginwith,askwhethertheythinksomethingiswrongwiththeindividual ornot.

• Ifso,askthemwhatdotheythinkthatiswrongwithhim/her?Theyareunlikelytoreport

problems with “hallucinations” or “delusions”. They may instead report the effect of

hallucinationsordelusionsontheindividual’sbehavior. Forexample,thatheorshe laughs

and talks to himself, says things that do not make sense, is not doing well in work or

school, ordoesnotwanttospendtimewithotherpeople.

• Ask if they know what illness the individual has. They may not have been told the

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diagnosis,oriftheyhave,theymaynotunderstandthedetails.

• Find out about their knowledge about medications. Do they know why medicines are

given?What is the relationship between themedications and the symptoms?What are

thesideeffects of themedication?

• Askiftheythinkmedicationcanmakethembetterorworse.

• Askwhatthey thinkabouthowlongthe illnesslasts. Somefamilies expect the illness to

becuredwithmedication.Theymaynotbeawarethattheremaybemanyepisodes.

• Finally,askwhatthey thinkabout thecauses ofthe illness.Most familymemberswillnot

consider mind problems as being themain cause. They may wonder if they are being

punished for something they didwrong, and therefore feel guilty, angry or responsible.

Some family members may think that “evilspirits”causeit.Parentsmaywonder ifithas

been inherited andmay blame the other spouse if they have a relative with a mental

illness.

4. Giveinformationabouttypicalsymptomsofschizophrenia

• Explaineachsymptomgroupinturn(hallucinationsanddelusions,problemswith

motivation,problemswiththinkingclearlyandnotunderstandingtheyareunwell)

• Useexamplesfromthe individual’sbehaviour tohelpexplain

• Tell the family that each individual has a different symptom pattern and will have

different symptoms at different times. This is important, as family members may not

listentoyouwhenyoudescribesymptomsthattheindividualdoesnothave.

• Emphasizethatthehallucinationsanddelusionscannotbeeasilyunderstood.Theyare

thoughts, ideas,andvoicesthatgo in insidethe individual’shead.Thefamilycanon ly

seetheireffects throughthe individual’sbehavior.

• Emphasize that the symptoms are real to the individualand they cannot control them.

Forexample,theycannothelpbutanswerthevoicestheyhear.

• Emphasize thatproblemsofmotivationandproblemswiththinkingclearly cannotbe

easily overcomebythe individual.

5. Thecausesofschizophrenia

• Explainthatbothstressandvulnerabilityareusuallyneededforapersontodevelop

schizophrenia,butsometimeswedon’tknowwhyapersondevelopstheillness.Give

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examplesofstressandvulnerability.Whendiscussingvulnerability,donotemphasisethat

havingaclosefamilymemberwithschizophreniaincreasestherisk,asthismaybe

stigmatising.Instead,focusondifficultearlylifeexperiences.

• Familiesusuallyhavetheirownbeliefsaboutthecauseoftheillness.Youshouldlistento

theseideas.Itispossibletohavemorethanonebeliefaboutthecause.

• Familymembersmay thinktheycausedor couldhavepreventedthe illness insome

way. Theseideasmakethefamilyfeel guiltyanddepressed.Youshouldreassurethe

familythattheydidnotcausetheillness.

• Ifthefamilyasksyou,youcantellthemthattheirchildrenwillmostlikelyNOTdevelopthe

illnesstoo.

6. Courseofschizophrenia

• Inform them that there are good chances individual can recover from an episode and

have anearnormallife.

• Alsotellthemthattheillnessmaycomeback(relapse),evenoncetheyhavestartedtofeel

better.Describesomeofthesignsthatarelapseiscoming(e.g.problemswithsleep,

feelingangryoranxious).Totryandstopthishappeningtheyshouldcontinuemedication

allthetime.Howeversometimesthingsoutoftheindividual’scontrolwillhappene.g.

physicalillnessorlifestress,whichmaytriggertheillnesstocomeback.Iftheillnessdoes

comebackitisimportantnottogiveuphope.

7. Howcommonisschizophrenia

• Tellthemabout10peoplehaveschizophreniainanaveragekebele.Youdon’tneedtogive

themtheexactnumberforthekebeletheylivein.

8. Medication

• Whatarethemedicinesfor

Tell them medication may reduce symptoms, prevent relapse and improve the chances of

recovery.

• Howdo theywork

Tell them the medication works by improving theway themindworks and prevents it from

gettingsickagain.Theresultofthiswillbefewer hallucinationsanddelusions.

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• Whatisthenameofthemedicationthathasbeenprescribed?

• Whatarethecommonsideeffects

• Regularmedication

Discusswith the familyandemphasize the need for takingmedication regularly.Thereis

aseparatemoduleforsupportwithtakingmedication(Chapter20).

• Continuingmedication

Emphasize thatmedication will need to be taken for a long period of one to two years or

evenforever. Thedurationofthetreatmentdependsonhowwelltheindividualisrecovering

andnotonhowlongthe illnesswastherebefore the treatmentstarted.

• Addressconcerns

Some families think that the medications are addictive if used for a long time. The family

maythendecidethattheindividualshouldlearntocopewithoutthemedication.Thisviewis

notcorrect.Beclearthatthemedicinesarenotaddictive.

9. Stress-vulnerabilitymodel

• Explainthatbothreducingstressandtakingmedicationcanhelpreducerelapsesandhelp

thepersontorecover

• ExplainthatotherpartsofCBRcanhelpreducestress,forexampleimprovingthefamily

environment,reducingstigmaanddiscrimination

Followup

• Bepreparedtoremindthefamilyoftheinformationatlaterhomevisits

• Lookuporaskyoursupervisoranyquestionsthatyoudidnotknowtheanswerto.Givethe

individualandfamilytheinformationatthenexthomevisit

Yosef’sstory

Berhanexplainswhatthesymptomsofschizophreniaare,referringbacktoYosef’sproblems.

Sheexplainsthecausesofschizophreniaandtheimportanceofmedication.Addisisstillsure

thatYosef’sillnesswascausedbyspiritpossession,butshecanalsoseethatthemedication

isuseful.Addisdoesnot trytochangeAddis’beliefsaboutspiritpossession.Yosef’s family

havelotsofquestionssoittakestwovisitstocoveralltheinformation.

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16.5 Summary

• Manypeoplewithschizophreniaandtheirfamiliesdonotknowmuchabouttheillness

• If people with schizophrenia knowmore about their illness they are more likely to take

positivestepstowardsrecovery

• You shouldgive the following informationabout schizophrenia: typical symptoms, causes,

course,howcommon it is,medication(names,sideeffects, importanceof takingregularly

and continuing once well) and the stress-vulnerability model.

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17 Module:Improvingaccesstohealthservices

17.1 Whatproblemsdopeoplewithschizophreniahaveaccessinghealthservices?

Therearethreelevelsofhealthservicesthatareavailableforpeoplewithschizophrenia.

1. Healthcentre

NursesandhealthofficersinSodoworedaaretrainedtolookafterpeoplewithschizophrenia.

Nearlyallthemedicalcareforindividualstakesplaceinhealthcentres

2. ButajiraOutpatientClinic

Psychiatric nurses at Butajira have expert knowledge about schizophrenia. Sometimes health

centrestaffwillsendindividualsherewhentheyareveryunwell.

3. AmmanuelHospitalinAddisAbaba

Psychiatrists (doctors with expert knowledge on mental illness) look after people with

schizophreniaatAmmanuelHospital.Rarely,anindividualwillbesentherewhentheyarevery

unwell.

Problemsaccessinghealthservices

Sometimespeoplewithschizophreniahavedifficultygettingtothehealthcentreorhospitalto

getthetreatmenttheyneed.Thismaymeanthateventhoughtheindividualiswillingtoseethe

nurseorhealthofficerandtotakethemedication,theyarenotableto.

17.2 Whydopeoplewithschizophreniahaveproblemsaccessinghealthservices?

There are various reasons why people with schizophrenia have problems accessing health

services.Theseinclude:

• Thefamilycannotaffordthemedication

• Thefamilycannotaffordtotraveltothehealthcentre

• Thereisnobodytogowiththeindividual

• Itisdifficulttotaketheindividualtothehealthcentrebecausetheyareunwelloritisfar.

• Themedicationisnotalwaysavailableatthehealthcentre

• Theindividualischainedupathome

Insomecasestheindividualisabletoaccesshealthservicesbutchoosesnottobecausetheydo

notwanttoreceivetreatment.

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17.3 Whydoweneedtoimproveaccesstohealthservices?

Gettingaccesstothehealthcentre isessential forrecoveryfromschizophrenia.Atthehealth

centretheindividualisreviewedbyanurseorhealthofficerwhowill:

• Checkoverallprogress

• Prescribethemedicationorgivetheinjection.Peoplewithschizophrenianeedtotaketheir

medicationregularlyinordertofeelbetterandgetbacktousualactivities(seeChapter20)

• Checkforandtrytoimprovesideeffects

• Changethedoseofthemedicationifitisnotenoughortoomuch

• ReferthemtoButajiraoutpatientcliniciftheycannotmeetallindividual’sneeds

Howoftenpeoplewith schizophrenianeed to attend thehealth centredependsonhowbad

their illnessisatthattime.Usuallytheyneedtoseeanurseorhealthofficerandcollecttheir

medicationevery1-3months.

17.4 Howcanweimproveaccesstohealthservicesforpeoplewithschizophrenia?

1. Informthefamilywhathealthservicesareavailable


Explaintheimportanceofaccessinghealthservices.

3. Assessproblemswithaccessinghealthservices

Findoutwhatthecurrentarrangementsforaccessingmedication.Thenassessanyreasonswhy

the individual has problems accessing health services, or might do in the future. Use the

potential reasons above (Section 17.2) as a starting point. If the individual is able to access

services but does notwant to, youmayneed to completeModule: Supporting Individuals to

TakeMedication(Chapter20).

4. Useproblemsolvingtoimproveaccesstohealthservices

You should then discuss each reason or problem in turn with the individual and caregiver.

Encouragethemtothinkofideasforhowtogetaroundtheproblemusingtheproblemsolving

approach (Section10.5).Discuss the approaches theyhavealready tried.Buildon their ideas

and then suggest some of your own if everything has not been covered. Some or all of the

followingmethodscanbeused.

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a. Exploreaccessingfreemedication

Acertificateforfreemedicationcanbegivenbythekebeleadministrationtothe‘poorestofthe

poor’.Only5 inevery1000 families can receive this certificate, thereforenotall peoplewith

schizophreniawillbeeligible.However,ifyouthinkthatthefamilyisamongstthepoorestinthe

kebeleand theydonotalreadyhave the certificate, you should take someaction. Firstof all

encouragethefamilytoapproachthekebeleleadersandrequestthiscertificateforthemselves.

Discusswiththecaregiversthekindofthingstheymightsay.Ifthisisunsuccessful,youshould

approach the kebele leader yourself and request that the family receives the certificate. See

Task8intheCommunityEngagementchapter.

b. Maketravellingtothehealthcentreeasier

Discusspotentialsourcesofhelpfortravellingtothehealthcentre.Thismayincludeextended

familymembers, neighbours or community leaders. Theymaybe able to givemoney for the

transport costs, or help to accompany the individual, along with family members, on the

journey. If the family is unable to find additional support themselves, you couldmeetwith a

communityleaderandaskfortheirhelp.SeeTasks8,9and10intheCommunityEngagement

chapter. You are not normally expected to accompany the individual to the health centre

yourself,exceptforaroundthetimeoftheCBRReviews.

c. Addressfinancialproblems

Poverty is a long-term problem, which may to be difficult to improve over the course of

receiving CBR.However, financial problemsmaybe addressed to someextent by getting the

personwithschizophreniabacktowork(SeeChapter27).Rememberyoushouldnotpayforthe

individual’smedicationyourself.

5. Discussdeliveringmedicationtotheindividual’shome

Youshouldonlydiscussthis iftheindividualorfamilysuggests it.YouortheHealthExtension

Worker taking themedicine from thehealth centre to the individual’shome shouldbea last

resortwhenalltheotherrelevantmethodshavebeentried.Thereasonforthisisthatitisnot

anempoweringorsustainablewaytoensurethepersontakesmedication.Fordeliverytothe

home to be considered, the individual should be very unwell and not attending the health

centre.Discussthiswithyoursupervisor.

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6. Monitorwhethertheindividualattendsthehealthcentre

Eachindividualshouldgotothehealthcentreevery1to3months.Youshouldbeawareofall

the appointments they have, and check if they have attended. If they have missed an

appointment,evenifyouarenotdueforahomevisit,youshouldmakeahomevisittocheck

foranyproblemsandremindthemtoattend.Iftheindividualchoosesnottoattendthehealth

centre you should discuss the potential benefits of treatment but also listen to their own

wishes.

7. Makeaplan

Attheendofthediscussion,makesurethateverybodyknowswhatinputtheyareexpectedto

have.

Followup

Remembertocheckwhatprogresshasbeenmadebythenexthomevisit.

If you agreed to do so, discuss free medication certificate with kebele leader or support

travellingtothehealthcentrewithcommunityleader/s.

17.5 Summary

• Someindividualsdonotaccesshealthservicesduetomoneyortransportproblems

• Itisimportanttoaccessthehealthcentretogettreatment,asthismayimprovethechance

ofrecovery

• Waystoimproveaccessinclude:exploringthepossibilityoffreemedication,makingtravel

to the health centre easier, and improving financial problems.

Yosef’sstory

Addis tells Berhan that sometimes they can’t get to health centre because Yosef is too

unwelltowalkthere.Thismakesthingsworseasthenhecan’tgetthemedication.They

agreethattogetoverthisproblemtheyneedhelptogettothehealthcentre.Theydiscuss

whocouldhelp.AddisagreestoaskherunclesandcousinstohelpwalkorcarryYosefto

mainroad.Theywillthengetagariusingsmallamountofmoneyborrowedfromuncle

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18 Module:Preparingforacrisis

18.1 Whatkindsofcrisesdopeoplewithschizophreniahave?

AswelearntinChapter14,peoplewithschizophreniaarevulnerabletomanysortsofrisks.A

crisisiswhendangerousorworryingincidentshappenasaresultoftheserisks.Somecommon

typesofcrisisinclude:

• Theindividualtalksaboutortriestocommitsuicide

• Theindividualisthevictimofphysical,emotionalorsexualabuse

• The individual behaves in a dangerous way. For example they consume poisonous fluid

thinkingitwouldn’thurtthem,ortheyjumpoffaroof.

• Theindividualthinksthefamilyorhealthworkeristryingtoharmthemandtriestoprotect

themselvesinanaggressiveway.

• Theindividualdoesnotwanttoeatordrink

Theindividualmayfeelscaredandalone.Thefamilymaynotknowhowthebestwayto look

aftertheindividual,andmayfinditdifficulttocope.

18.2 Whydopeoplewithschizophreniahavecrises?

Manytypesofcrisishappenduetotheillness.Forexample,behavinginanunpredictableway

or thinking others are trying to harm them may be due to hallucinations or delusions

(experiencing or believing things that aren’t true). These are all likely to beworsewhen the

individualishavingarelapse(whentheillnessgetsmuchworse).Othertypesofcrisisaredueto

stigmaorotherexternalfactors.Forexample,beingbeatenattheholywater.Althoughthese

thingscanhappenatanytime,theyarealsomorelikelytohappenwhentheindividualisvery

unwell.

18.3 Whyisitimportanttoprepareforacrisis?

InChapter14youlearnthowyoushouldrespondwhenyouidentifytheindividualisatrisk.We

alsoneedtogivefamiliesadviceonhowtodealwithacrisiswhenoneoccurs.Itisgoodtogive

thefamilyskillstodothisbecausetheyarethemaincarers,andtheyneedtoknowhowtocope

whenyouarenolongervisitingthem.Beingwellpreparedforacrisishelpstoavoidaseriousor

undesirableoutcome,forexampletheindividualhurtingthemselvesorsomeoneelse,orbeing

chainedup.

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18.4 Howdowehelpindividualsandfamiliestoprepareforacrisis?

Principles

It isgoodtostartpreparing foracrisiswhenthe individual iswellenoughtotakepart in the

discussions. This gives the individual more control over the situation. Be aware that talking

aboutfutureorpastcrisesmaybeupsettingfortheindividualandfamily.

1. Discusswhatkindsofcrisisarelikely

Asktheindividualandfamilytothinkofcrisesthathavealreadyhappenedormighthappenin

thefuture.Usetheexamples inSection18.1tohelpthemtothinkabout it.Discusshowthey

willknowifacrisisishappeninge.g.theindividualstopstakingmedicationorbecomesangryor

upset.


Explainwhyyouwouldliketohelpthemtoprepareforacrisis.

3. Decidewhotoaskforhelp

Asktheindividualandfamilytodecidethreepeopletocallforsupportinacrisis.Tellthem

tokeep their phone numbers in morethanoneplacesotheydon’tlosethem.Thepeople

mightinclude:

• Arelative

• Aneighbour

• Acommunityorreligiousleader

• TheCBRworker.Remindthemthatthiswon’tbepossibleonceCBRhasfinished

4. Makeacrisisplan

Decidetogetherwhatactionsthefamilyshouldtakewhenthereisacrisisandrecordthese

ontheCrisisManagementPlan(Form22).Thismightincludethefollowing:

a) Trytomakesuretheindividualistakingthemedication

b) Taketheindividualtothehealthcentreforareview.Tellthefamilytomakesuretheyare

clearaboutwhattheplanisandwhattodonext.Tellthefamilytoinformyouorthehealth

centrestaffaboutviolentbehaviour,discussionaboutdeathorsuicideandanybeliefsthat

otherpeoplearetryingtoharmthem

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c) Contacttherelative/neighbour/leader.Justbringingsomeoneelseintothehometoassessthe

situationmaybeuseful.Theymayalsohelpwithgettingtothehealthcentreifthisisdifficult.

d) Removeaccesstoweaponsandpotentiallypoisonousmaterials

e) Maketheenvironmentsafeandcomforting.Givetheindividuallotsofspace.

f) Removeallaccesstoalcoholandkhat.

g) Encouragetheindividualtoputstrongfeelingsandenergyintosafeactivitiestheyenjoy,

suchaslisteningtotheradio

h) Suggesttheindividualtriesrelaxationtechniques(SeeSection23.4)

5. Discusshowthefamilyshouldtreattheindividualduringacrisis

• Useacalm,positivebutfirmtoneofvoice.

• Usesimplelanguage

• Givetheindividualextratimetorespondandtocalmdown

• Reduceexpectationsaboutworkorhouseholdtasks

6. Discusswhatactionsarenotusuallyhelpful

• Thefamilyshouldtrynottoarguewiththeindividual.Thiswillonlymaketheperson

confusedand frustrated.Insteadthefamilyshouldbeloving.Thefamilyshouldn’tdisagree

with delusions.It’soktotellthepersontheydon’tseethingsthesamewayandleaveitat

that.

• Thefamilyshouldnotacceptviolencefromthe individual.The individualshouldbeclearly

toldthatthisbehaviourisunacceptable.

• Theyfamilyshouldnotbeviolenttowardstheindividualandshouldtrytoavoidrestraining

them.

7. Makeaplantodealwiththecurrentcrisis,ifthereisone

Followup

If there iscurrentlyacrisis,makesureyoufollowuponwhathashappenedandwhetherthe

stepshelpedatthenexthomevisit.

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18.5 Summary

• It iscommonforpeoplewithschizophreniatohavecrisessuchasdangerousbehaviouror

thinkingaboutsuicide

• Itisimportanttoprepareforacrisistoavoidseriousoutcomessuchasgettinghurtorbeing

chained

• Waystoprepareforacrisis include:decidingwhotoaskforsupport,makingacrisisplan,

andthinkingaboutwaystotreattheindividualduringthecrisis.

Yosef’sstory

YosefandAddisagree that themost likely crisis is that Yosefwill becomeunwell and run

away, like hashappened in the past. They agree that if a crisis happensSolomon (Yosef’s

father)willasktheiruncleforhelp.Theymightalsoaskthelocalpriest,whoseopinionthey

respect. Berhan writes down the crisis plan. The family cannot read but they appreciate

Berhanhavingtheplanwrittendown.ThismeanstheycanlookbackatitlaterwithBerhan.

Yosef’sCrisisManagementPlan

• CheckifYosefistakingthemedication.Gentlyencouragehimtostarttakingitagainifhehasstopped.

• Gotothehealthcentreforareview,withthehelpoftheuncle.• TellthelocalpriestifYosefhasrunaway,incasehecanhelptofindhimandbring

himhome.• IfYosefisstillathome,makesurehehassomespacetohimself.• Makesurethereisnoalcoholorkhatinthehouse.

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19 Module:Dealingwithhumanrightsproblems

19.1 Whathumanrightsproblemsdopeoplewithschizophreniaexperience?

All people, including all people with schizophrenia, have the same human rights. Quite

commonly peoplewith schizophrenia are denied their human rights.We have already learnt

aboutsomehumanrightsproblems inChapter7,and inChapter14as theyarealso typesof

risksandcrises.Thehumanrightsproblemsexperiencedbypeoplewithschizophreniainclude:

• Chainingandrestraint

• Neglect

• Physicalabuse

• Sexualviolence

• Notaccessinghealthservices

Manypeoplewithschizophreniafinditdifficulttoaccesshealthserviceseitherfortheirmental

illness or for physical health problems (see Chapter 17). On some occasions people with

schizophreniaareactuallyexcludedfromgettingthesamelevelofhealthcareaspeoplewhodo

nothavementalillness.

• Notbeingabletoworkorgetmarried

Sometimespeoplewithschizophreniacannotdousuallifeactivitiessuchasworkingorgetting

marriedbecausetheyaretoounwell.Justasoften,individualsfinditdifficulttodothesethings

duetostigmaanddiscrimination(seeChapter6).

19.2 Whydopeoplewithschizophreniaexperiencehumanrightsproblems?

• Duetobeingunwellandthefamilynothavingenoughsupport

Peoplewithschizophreniamaygetmentallyunwellfromtimetotime.Thiscanhappenbecause

theyarenotaccessingtreatmentorbecausethemedicationisnotsufficienttohelpthem.

Duringthesetimes,ifthefamilyhaslittlesupporttheymayfeeltheyhavenochoicebutto

restraintheindividual.Usually,theyaretryingtoprotecttheirfamilymemberfromrunning

awayandbeingharmedinanaccident,orbyotherpeople.Oftentheyarealsoconcernedthat

theindividualmayharmotherpeopleordamageproperty.Whenapersonisunwellwith

schizophreniaandthefamilydoesnothaveenoughsupportitalsobecomesmoredifficultfor

thefamilytolookafterthemproperly.Itbecomesdifficulttokeeptheindividualfedand

clothed.Itcanthenbecomemoredifficulttogetthemtothehealthcentre,whichmakesallthe

problemsworse.

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• Nottakingmedication

When a person with schizophrenia is not taking their medication, the family may resort to

secretlygivingthemedication(forexamplemixedintofood),tyinguporphysicallyforcingthe

individualtomakethemtaketheirmedication.Thepersonmayalsobetiedupinordertomake

thejourneytothehealthcentreorhospital.

• Stigmaanddiscrimination

Manypeopledon’t knowverymuchabout schizophrenia. Theymaybelieve thatpeoplewith

schizophreniaarealwaysviolent,orthattheyarepossessedbythedevil.Thesekindsofbeliefs

can leadpeople to treat thosewith schizophreniabadly, suchasbybeating themor keeping

themtiedupevenwhentheyarewell(SeeChapter6).

• Traditionalandreligioushealing

Most traditional and religious healing does not harm people with schizophrenia. However,

sometimeswhenaperson refuses to takeholywater, theymaybebeatenor tiedupso that

they can be forced to take thewater or bathe in it. Also, some traditional healing practices

include physical abuse such as branding, beating and fumigation. All of these things make

schizophreniaworse,andareanabuseofhumanrights.

• Nohealthservicesavailable

Oftenthereasonwhypeopledonotgetmedicalcareforschizophreniaisbecausethereisnone

availablelocally,oritistoofarortooexpensiveforthemtouse.

19.3 Whyisitimportanttoreducehumanrightsproblemsinpeoplewithschizophrenia?

Peoplewithschizophreniahavethesamehumanrightsasallpeople,soweshouldensurethey

areprotected.Reducinghumanrightsissuesisalsoanimportantwaytohelptherehabilitation.

Whilsttheyaretiedup, individualscannotbegintoundertakeusual lifeactivities likewashing

and dressing, drinking coffee and doing farmwork. Treating people with schizophrenia with

dignityandrespectwillimprovetheirself-esteemandconfidenceandmakeitmorelikelythey

willgetbacktotheirusualactivities.Thisinturnreducestheburdenonthefamily.

19.4 Howcanwereducehumanrightsproblemsinpeoplewithschizophrenia?

Principles

OneofthemainaimsofCBRistoreducehumanrightsproblems.CBRcandothisby:

• Improvingaccesstohealthservicesforphysicalandmentalhealth(seeChapter17)

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• Improvingunderstandingaboutschizophreniaandchangingnegativeandincorrectbeliefs

amongstthefamily(seeChapter16)andcommunity(seeChapter31)

• Improvingself-care(Chapter24)andnutrition(seeChapter21)

• Improvingthefamilyenvironment(seeChapter25)thereforereducingthelikelihoodof

emotionalandphysicalabuse.

Therearealsospecificstepswecantaketoreducehumanrightsproblems.Rememberthat

discussinghumanrightsproblemsmaybeupsettingfortheindividualandfamily.Besensitiveto

thisandbereadytotakeabreakfromthediscussionsifnecessary.


Explainwhathumanrightsare,andthatpeoplewithschizophreniahavethesamerightsas

otherpeople.Explainwhyitisimportanttoprotectthehumanrightsofpeoplewith

schizophrenia.

• Theindividualcannotbegintogetbacktousualactivitieswhilsttiedup

• Treatingtheindividualinadignifiedwaywillimproveself-esteemandmakeitmorelikely

theywilldousualactivitiesagain

2. Assesshumanrightsproblems

Youshouldbeginbydiscussingwhathumanrightsissuestheindividualhasfacedinthepast,or

present ormay face in the future. You should also refer back to the risk assessment,where

humanrightsissuesmayhavebeenidentified(seeChapter14).

3. Educatethefamilyaboutchainingandphysicalabuse

Advisethefamilythatchainingisnotdesirable,evenifthishasn’thappenedtotheindividual.

Usethereasonsgivenabove(seeSection19.3)forwhyitshouldbeavoided.

4. Useproblemsolvingtoreducehumanrightsproblems

You should then discuss each human rights issue in turn with the individual and caregiver.

Encouragethemtothinkofideasforhowtoavoidtheissueinfutureusingtheproblemsolving

approach(seeSection10.5).Discusstheapproachestheyhavealreadytried.Buildontheirideas

and then suggest some of your own if everything has not been covered. Some or all of the

followingmethodscanbeused.

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a. Helpindividualstotaketheirmedicationandreducerelapse

UsethestrategiesinChapters20and30tosupportindividualstotakemedicationandreduce

relapse.Thesewillhelpavoidsituationswheretheindividualbecomesunwellandthefamily

turntochaining.

b. Helpfamiliestodealwithviolenceandcrises

Givingthefamilystrategiestodealwithviolencefromthepersonwithschizophrenia,andother

crisessituations,willhelpthemtoavoidresortingtochaining.SeeChapter18.

c. Educatecommunitymembersandcommunityleaders

Partoftheawareness-raisingforcommunitymembersandcommunityleadersshouldbethat

restraintshouldnotbeusedexceptinanemergency(seeTasks5and6intheCommunity

Engagementchapter31).Askthefamilyifthereisanyparticularindividualwhowouldbenefit

fromeducationaboutchainingorphysicalabuse.

d. Educatingholywaterpriests,attendantsandtraditionalhealers

Holy water priests and attendants and traditional healers may be involved in your general

communityawarenessraising.Ifnot,andyoufeelthereareparticularproblemswithpriestsor

attendants you have identified, you may need to undertake specific meetings with these

individuals.Askthefamilyifthereisanyparticularindividualwhowouldbenefitfromeducation

aboutchainingorphysicalabuse.Theaim is toencourage themtoavoidchainingorphysical

abuseduringtheirhealingpractices.SeeTask11inCommunityEngagementChapter31.

5. Whattodoifsomeoneischained(seealsoChapter14)

Ifanindividualischainedwhilstyouareworkingwiththefamilyfollowthesesteps:

• Tellyoursupervisorimmediately.

• Facilitateaccesstothehealthcentreforaclinicalreview.Askthefamilytotakethe

individualassoonaspossible.


makeajointhomevisitwithyoursupervisor.



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• Trytoaddressthesereasons,forexample:

o Repeattheimportanceofreceivingtreatmentforimprovingsymptoms

o Mobilisecommunityleaderstohelptheindividualtraveltothehealthcentre

o AlsoseeChapter17


youshouldinformtheTrialPsychiatricNurse.

Unchaining

Donottellthefamilytounchaintheindividualwithoutsupportfromyoursupervisorandthe

healthcentre.Thedecisiontounchainshouldbemadebythefamily,preferablyindiscussions

withthehealthcentre.

6. Reducingharmfromchainingwhenitoccurs

Despite the best efforts of you, the family and the individual, sometimes the individualmay

becomesounwellthatthefamilystillfeelsthebestoptionistotieuptheindividual.Youshould

informyoursupervisorandfacilitatetheindividualtoattendthehealthcentreforareview.You

should not encourage chaining, however you can offer the following advice to the family to

ensurethatchainingisassafeanddignifiedaspossiblewhenitdoesoccur.

• Makesuretheindividualisinashelteredpositionnotexposedtothesunandrain.

• Makesuretheindividualhassomeclothingand/orblanketstokeepwarm

• Makesuretheindividualisofferedregularfoodandwater.Helpandencouragementshould

begiventoeatanddrink.

• Ifpossible,allowtheindividualtobeunchainedeverydaytowalkaround

• Changethepositionofthechains/restraintasoftenaspossible,toensuretheindividualis

notalwayssittingorlyinginthesameposition

• Checkregularlyforwoundsorsorescausedbythechains/restraint,orbylyinginthesame

positionforalongtime.Carefullywashanywoundsorsoreswithcleanwater.Changethe

positionofthechainstoallowthewoundstoheal.

• Continueinteractingwiththeindividualandinvolvingtheminconversation

• Iftheindividualbecomesphysicallyunwell,takethemtothehealthcentre

7. Whattodowhenotherhumanrightsabusesoccur

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• Neglect.SeeChapter35.

• Physicalabuse.SeeChapter35.

• Sexualviolence.SeeChapter35.

• Notaccessinghealthservices.CompleteModule:ImprovingAccesstoHealthServices

(Chapter17).

• Notbeingabletoworkorgetmarried.ConsidercompletingModules:Gettingbacktowork

(Chapter27),Takingpartincommunitylife(Chapter26)orDealingwithStigmaand

Discrimination(Chapter28)dependingonthesituation.

8. Makeaplan


havebeforethenextsession.

Followup

Checkwhatprogresshasbeenmaderelatingtohumanrightsproblemsatthenexthomevisit.

19.5 Summary

• Quitecommonlypeoplewithschizophreniaaredeniedtheirhumanrights,forexamplethey

arechainedorphysicallyabused.

Yosef’sstory

InthepastwhenYosefwasveryunwellAddisandSolomonfeltitwasnecessarytochain

Yoseftothehouse.Thekebelechairpersonalsotoldthemitwastheirresponsibilitytothis,to

protectotherpeopleandpropertyinthekebele.YosefandAddisfinditupsettingtotalk

abouthimbeingchainedup.Berhantellsthefamilythatsheunderstandsthattheywereonly

tryingtohelpYosefandprotectotherpeoplewhentheychainedhimupinthepast.

However,itisimportanttotrytopreventthishappeninginthefuture.Thefamilyagreethat

themainwaytoavoidchainingistoensureYoseftakeshismedicationregularly.Theyagree

thatinthefuturetheywillcompletetheModule:Supportingindividualstotakemedication.

SolomonandAddisfeeltheycannothaveanyinfluenceonthekebelechairperson.Berhan

agreestodiscusstheissuewithhim.Berhanalsogivesthefamilyadviceonhowtochain

Yosefinawaywhichisasdignifiedassafeaspossible,incasetheyeverneedtodoitasa

lastresort.

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• Respectingthehumanrightsofpeoplewithschizophreniaisempoweringandmakesitmore

likelytheywillgetbacktousualactivities.

• You can reduce human rights problems by: educating the family, supporting adherence,

helping families to deal with crises, and educating community leaders and traditional

healers.

• Therearewaystoreducetheharmfromchainingwhenitdoesoccur.

.

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20 Module:Supportingindividualstotaketheirmedication

20.1 Whatproblemsdopeoplewithschizophreniahaveintakingtheirmedication?

Some people with schizophrenia refuse to take any treatment from the beginning. More

commonly,peoplestartthemedicationbutthenstoptaking itregularly,orstop italtogether,

overaperiodoftime.

20.2 Whydosomepeoplewithschizophrenianottaketheirmedication?

Individualfactors

• Insufficientsupportfromthefamily

• Theindividualfeelsshameorstigmafromtakingthemedication,especiallyiftheynolonger

havesymptomsandwishtobeseenaswell

• Theindividualand/ortheirfamilybelievethattheillnessisduetospiritpossessionorother

causes,andthatmedicationwillnothelpthis.

• Theindividualand/ortheirfamilyunderstandthatmedicationhelpstorelievesymptomsin

theshorttermbutdonotunderstandthe importanceofmedicationtopreventthe illness

comingback.

• Holy water priests or attendants or traditional healers tell the individual that it is not

needed,orevenharmful,totakemedicationwhilstreceivingtraditionaltreatment

Illnessfactors

• People with schizophrenia may not understand that they have an illness that needs

treatment.Becauseoftheirillness,theymayevenbelievethatthetreatmentisbeinggiven

tothemtoharmthem.

• Peoplewithschizophreniaoftenhavelowlevelsofmotivation

• Peoplewithschizophreniaoftenhavelowlevelsofattentionandconcentration

• Thepersonmayalsobeusingkhatoralcohol.Thismaymake them lessorganisedor less

interestedintakingmedication.

Treatmentfactors

• Themedicationcausesunpleasantsideeffectsinthepersonwithschizophrenia

• Thepersonwithschizophreniadoesnothaveenoughfoodtocopewithfeelingmorehungry

thanusualasaresultofthesideeffectsofthemedication

• Thepersonwithschizophreniadoesnothaveagood,trustingrelationshipwiththenurseor

doctorprescribingthemedication

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• Themedicationhastobetakenonacomplicatedschedulesothepersonwithschizophrenia

forgetstotakethemedication.

• Themedicationdoesnotcompletelycuretheillnesssotheindividualdoesnotseethepoint

intakingit.

Practicalfactors(seeChapter17)

• Thefamilycannotaffordthemedication

• Thefamilycannotaffordtotraveltothehealthcentre

• Itisdifficulttotaketheindividualtothehealthcentrebecausetheyareunwelland/oritis

toofar.

• Thereisnoonefreetotaketheindividualtothehealthcentre.

• Themedicationisnotalwaysavailableatthehealthcentre

20.3 Whyisitimportanttotakemedicationregularly?

It is important to take medication regularly to treat the illness so that the person with

schizophreniastartsfeelingbetter.Whenindividualstakemedicationtheyaremorelikelytobe

abletogetbacktousualactivitieslikefarmworkandhousework.Oncetakingthemedication,it

also ismuch less likely that the individualwill be so unwell that the family needs to restrain

them up. It is very important to continue to take medication, even after the person with

schizophreniaisfeelingwellagain.Thisistopreventtheillnessfromcomingback.Iftheillness

comesbacktheindividualmaystopbeingabletoworkandsocialiseagain.Eventhoughthere

are somedisadvantages to takingmedication, forexample the sideeffects,mostpeoplewith

schizophreniafeelonbalancethatlifeisbetterwhentakingthemedication.

20.4 Howcanwesupportpeoplewithschizophreniatotaketheirmedication?

Principles

• Thereisnotonesingleapproachtohelpingpeopletotaketheirmedication.Oftenarange

ofmethodsisneededforeachindividual.

• Whichmethodsyouusedependsontheirsocialandpersonalcircumstances

• Whensomebodydoesnottakehisorhermedication,itisusuallynotaproblemthatcanbe

quickly ‘solved’. Thismeansongoing input isneeded,usually for thedurationof receiving

CBR.

• You should not hassle or force the individual to take medication. The individual should

continueCBReveniftheyarenottakingmedicationforanyreason.

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1. Revisetheinformationaboutmedication

Revisethefollowinginformationaboutmedication.

• Whatisanti-psychoticmedication

• Sideeffectsofanti-psychoticmedication

2. Explainwhyyouaredoingthemodule

Explainwhy it is important to takemedication regularly andwhy is it important to continue

takingmedicationwhenfeelingwell.

3. Assessingproblemswithtakingmedication

Findoutwhatthecurrentarrangementsarefortakingmedication.Whendotheytakeit?Does

anyone remind them? Then assess the reasons why the individual has problems taking the

medication,ormighthaveproblemsinthefuture.Askwhattheirattitudetowardsmedication

is.Havetheyfoundituseful?TheChecklistforproblemstakingmedication(Form15)shouldbe

used.ThiscoversthereasonsinSection20.2.

4. Problemsolvingtoimprovetakingmedicationregularly

You should then discuss each reason or problem in turn with the individual and caregiver.

Encouragethemtothinkofideasforhowtogetaroundtheproblemusingtheproblemsolving

approach (Section10.5).Discuss the approaches theyhavealready tried.Buildon their ideas

andthensuggestsomeoralloftheonesbelow,iftheyhavenotbeencovered:

a. Involvethefamily

The individual’s immediate family are the most important people to help them take

medicationregularly.Youshould:

• Trytounderstandthefamilymember’sviewpointand attitudes towardsmedicines

• Involve them in understanding the reasons for not taking medicines and deciding the

bestmethodstoimprovethesituation

• Provide themwith informationon thebenefitsandsideeffectsof medicines.

• Involvemembers of the extended family (uncles, aunts, cousins, etc)who liveoutside

99

the home. They may have a significant role to play in ensuring individuals take

medication regularly. Find out who the important individuals are and consider meeting

withthemtogaintheirsupport.

• Getthefamilytousepositivefeedback

• Givethe family skills todealamicablywithsituationswhere thefamilymembers andthe

individualhavedifferentviewsonadherence(seeChapter25)

• Consideraskingthefamilytoobservethe individualeverytimetheytakethemedication.

However thismaynothelp the individual to feel independent, so try thisonly if this the

otherideasdonotwork.

b. Reinforceinformationaboutmedication

Giveorreviseinformationaboutmedications,theirbenefitsandsideeffects.Youmayneedto

giveinformationtootherfamilymembersaswellastheindividualandcaregiver.

c. Addresssideeffects

Discussconcernsaboutsideeffects.Therearesomesideeffectsyoucanhelpwithandothers

thatneedtobereviewedatthehealthcentre(seeTable4).

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Table4Howtohelpwithsideeffects

Whathappens? HowyoucanhelpThemouthisverydry Try putting a clove in the mouth or sipping

waterAlotofsalivaisproduced Advisethemtoputaclothnexttotheirmouth

atnightConstipation Advisethemtodrinklotsofwaterandeathigh

fibrefoodse.g.lentilsandvegetablesThe person feels dizzy when they gofromlyingdownorsittingtostanding

Advise person to get up slowly and wigglefingersandtoesbeforegettingup

The person wants to eat more thanusual

Advise that the individual probably does notneedmorefood,thisisjustasideeffectofthemedication.Tryeatingsmallamountsregularlyandincludingmorebulkyfoode.g.vegetables.Refer to health centre- for changeof doseorpossiblymedication.

Thepersonfeelsrestlessandcannotsitstill.

Refertohealthcentre

Thehead,neckorbodybecomesstuckinanunusualposition.

Refertohealthcentre

Thehandsshake RefertohealthcentreThe person moves very slowly andfeelstheirmusclesareverystiff

Refertohealthcentre

Thepersonisverydrowsy Refer to the health centre- the amount ofmedication may need to be changed, or thetime of day they take it. Drowsiness mayreduce when the person gets used to themedication

Writhing movements of the head,neck,armsorlegs.

Refertohealthcentre

Seizures RefertohealthcentreSexualproblems RefertohealthcentreSkinrash RefertohealthcentreThepersoncannotpassurine RefertohealthcentreSuddenly developing stiff muscles,fever,andconfusion

Taketohospitalimmediately

d. Getadailyroutine

Buildmedicationintothedailyroutine.Suggestthepersonwithschizophreniaalwaystakesthe

medicationafterdoingadailytaske.g.gettingwashedinthemorningorhavingbreakfast.

e. Usepositivefeedback

Peoplewith schizophreniahaveproblemswithmotivation.Theyneedfrequentandconsistent

101

feedback and appreciation from family members and you for continuing to take the

medication. Tobegin, the family can reward the individual taking his medication with clear

signsof appreciation (bytellingthemtheyaredoingwellorcooking his favouritedish).Make

itclearthatthisis linkedtothefact thatthe individualhasbeentaking themedicines.

f. Improverelationshipwiththenurse

Whenyouattend thehealth centrewith the individual around the timeofeachCBRReview,

oneofyourrolesistohelpimprovethecommunicationandrelationshipwiththenurse.Ifthere

isanyobviousmisunderstandingduringtheconsultation,trytoclarifythisatthetime.Youcan

also help the individual to raise any issues, for example that themedication schedule is too

complicated. After the consultation, check the individual and the caregiver understood

everythingandfillinanygaps.

g. Arrangeamedicationreviewatthehealthcentre

Takingthemedicationoncedailyislikelytobeeasiertoremember.If the individual feelsthat

the schedule is too complicated, they can discuss this with the nurse at the health centre.

Havingtheinjectioninsteadoftabletsusuallymakesitmorelikelytheindividualwilltakethe

medication,astheydon’thavetoremembereveryday.Ontheotherhandsomepeoplewith

schizophreniaarelesswillingtohaveinjectionsthantotaketablets.Itisnotyourdecisionto

changeto injections.However, ifothermethodshavebeentriedbutarenotsuccessful,and

theindividualiswillingtotryinjections,youcanencouragehimorhertospeak tothenurse

aboutthisatthehealthcentre.

h. Engagewithtraditionalandreligioushealers

Tryto findoutwhothehealer is.Youmayhavealreadymadecontactwiththemduringyour

initial community engagement (see Task 5 in Community Engagement Chapter 31).With the

permissionofthefamily,trytoarrangeameetingwiththehealer.Givetheminformationabout

schizophrenia, includingthatmedicationcanhelptoreducesymptomsandpreventtheillness

from returning. Tell them that the individual does not need to stop receiving holy water or

traditionalpractices,butthattheycanusemedicationalongsideit(seeTask11inCommunity

EngagementChapter31).

102

i. Exploreaccessingfreemedication

SeeChapter17.

j. Maketravellingtothehealthcentreeasier

SeeChapter17.

k. Addressfinancialproblems

SeeChapter17.

Table5canbeusedasaguideforwhichmethodstouse:

Table5Approachesforsupportingindividualstotakemedication

Problem Approach/sInsufficientfamilysupport InvolvethefamilyShameorstigma Giveinformation

InvolvethefamilyDifferingbeliefs Giveinformation

InvolvethefamilyLack of understanding about preventingrelapse

GiveinformationInvolvethefamily

Discouraged to take medication at holywater

GiveinformationEngagewithtraditionalandreligioushealersInvolvethefamily

Lackofawareness(duetoillness) GiveinformationInvolvethefamily

Lackofmotivationand/orconcentration PositivefeedbackDailyroutineInvolvethefamilyMedicationreviewathealthcentre

Khatoralcoholuse ReferraltohealthcentrePositive feedback when khat or alcohol isavoidedGetadailyroutineInvolvethefamily

Sideeffects AddresssideeffectsInsufficientfoodforincreasedappetite SmallregularmealsincludingvegetablesPoor relationship/communication withnurse

Improverelationshipwithnurse

Complicatedmedicationschedule MedicationreviewathealthcentreCannotaffordmedication Explorefreemedication

AddresseconomicproblemsCannotaffordtraveltohealthcentre Maketravellingtothehealthcentreeasier

AddresseconomicproblemsPractical issues travelling to healthcentre

Maketravellingtothehealthcentreeasier

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5. Difficultsituations

Whattodowhentheindividualrefusestotakethemedication

If the individual refuses to take themedication you should listen carefully and respect their

point of view. You should try the approaches above. However, sometimes the individualwill

continue to refuse. If this happens you should not hassle themor force them to take it, but

should refer them to the health centre for a review. It is important to remember that you

shouldcontinuewithCBReveniftheindividualisunableorunwillingtotakethemedication.

Givingtheindividualmedicationwithouttheirknowledge

Thecaregiversmayhavepreviouslygiventhemedicationwithouttheknowledgeoftheperson

withschizophrenia,forexamplebymixingitinfoodortea.Thefamilymayalsosuggestthisasa

methodfordealingwiththemnottakingthemedicationinthefuture.Thisisadifficultsituation

as the individual’s basic right to decidewhat treatment they receive is not respected. It also

meansthatiftheindividualgetsbettertheydonotrealisethatitisduetothemedication.This

makesitevenlesslikelytheywilltakethemedicationoutofchoicelateron.Inaddition,ifthe

individualfindsoutlateronthattheywerebeinggiventhemedicationinsecret,theymayfindit

difficulttotrustpeople.Thismightmaketheillnessworse.

Ontheotherhand,itisusuallyunderstandablewhenfamiliestakethisstep,iftheyfeelthereis

nootherwaytogetthepersontotakethemedication,andthereforegetwell.Youshouldnot

encouragethefamilytogivetheindividualmedicationwithouttheirknowledge.Ifthisisdone

orsuggested,youshouldexplaintothefamilywhythismethodshouldbeavoidedifpossible,

withoutappearingtobejudgemental.Yourroleisthentoensurethatalltheothermethodsfor

helpingtheindividualtotakemedicationareusedfirst.Tellyoursupervisorifyouareawareifit

ishappening.

Forcingindividualstotakemedication

Thecaregiversmayhavepreviouslyusedphysicalforcetogetthepersonwithschizophreniato

takethemedication,forexample,bytyinguptheindividualandforcingthemedicationintohis

orhermouth.Othersmaysuggestthisasamethodforfutureuse.

Youshouldencouragefamiliesnevertoforceindividualstotakemedicationinthisway.Aswell

asbeingdisempowering,itmaymakethepersonmoreagitated,ortheymayevengetharmed.

Tellyoursupervisorifyouareawareifitishappening.

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6. Makeaplan


have.Setsomespecifictasksfortheindividualandfamilytocompletebythenexthomevisit.

Forexample:

• Thepersonwithschizophreniaagreestotakethemedicationwithbreakfasteveryday

• The caregiver agrees to remind the individual to takemedicationwith breakfast, observe

whethertheytakeitornotandtogiveencouragementifheorshetakesit

• The CBR worker agrees to meet with the holy water priest and attendant and give

informationabouttheimportanceoftakingmedicationwhilstreceivingholywater

7. Monitoringmedication

You should assesswhethermedication is being taken at somepoint during everyhomevisit,

even if you are not currently working through this module. Ask both the individual and the

caregiver if therehavebeenanyproblems.Be sensitiveand respectful anddonothassle the

individualtotakethemedication.Useproblemsolvingtoaddressanyproblems,orcompleteor

repeatthismodule.RecordissueswithmedicationontheHomeVisitForm(Form11).

Yosef’sstory

Yosef says even when he is well he often has problems remembering to take his

medication.Themedicationmakeshimfeeltired,droolsalivaandmakeshishandsshake.

SometimesYosefgoestoholywater.Theholywaterattendantstellhimheshouldn’tuse

medicationatthesametimeasthiswillmeantheholywaterwillnotwork.

Addis and Yosef agree that Yosef needs the family’s help to remember to take the

medication. TheyagreeAddiswill remindhimandwatch him take it at breakfastevery

day.Whenhe takes itsheandSolomonwillgive lotsofencouragement.Berhanadvises

Yoseftotryputtingaclothnexttohismouthatnight,tohelpwiththedrooling.Shealso

askshimtogotothehealthcentreincasetheamountofmedicationcanbereduced,or

hecantakeitatnight.Berhanagreestodiscusstheimportanceofcontinuingmedication

withtheholywaterpriestandattendant.Shediscussesthiswithhersupervisor,Haile,and

theygotogethertotheholywatersite.IttakesBerhanandthefamilytwohomevisitsto

discussmedicationandcreatetheplan.

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Followup

Remembertocheckwhatprogresshasbeenmadeatthenexthomevisit. Ifrelevant,referto

the health centre, or meet with community leader, kebele leader or traditional or religious

healer.

20.5 Summary

• Manypeoplewith schizophreniahaveproblems taking theirmedicationdue to: individual

reasons (for example, not enough family support), illness factors (for example, not being

organised),treatmentfactors(forexample,sideeffects)andsystemicfactors(forexample,

cannotaffordtraveltohealthcentre)

• Takingmedicationisimportantforgettingwellandstayingwell

• Ways to help individuals takemedication include: involve family, give information, get a

dailyroutine,usepositivefeedback,educatetraditionalhealers,arrangemedicationreview

atthehealthcentreandaddresssideeffects.

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21 Module:Improvingphysicalhealth

21.1 Whatproblemswithphysicalhealthdopeoplewithschizophreniahave?

• Usualhealthproblems

Peoplewithschizophreniaexperiencethesamephysicalhealthproblemsasotherpeople.For

example,theymaygetmalaria,acoughorabrokenbonefromanaccident.However,people

withschizophreniaarelesslikelythanotherpeopletogetmedicalhelpforanyphysicalhealth

problemstheyhave.

• Otherdisabilities

Peoplewithschizophreniaarejustaslikelytohaveotherdisabilitiesasotherpeople.For

exampletheymaybeblindorhaveproblemswalkingduetochildhoodpoliooranaccident.

• Beingunderweightorunderweight

In Ethiopia, people with schizophrenia are commonly underweight. Much less commonly in

Ethiopia,peoplewithschizophreniamaybecomeoverweight.

• Reproductivehealthandsexualhealthproblems,needforfamilyplanningandantenatal

care

Like anyone else, people with schizophrenia have sexual relationships. Women with

schizophreniamayalsobesexuallyexploited.Theythereforeneedaccesstoadviceaboutsafe

sex,familyplanningandantenatalcarejustlikeotherpeople.

• Chewingkhat,drinkingalcoholorsmoking

• Physicalinjuries

Peoplewithschizophreniamaydevelopwoundsandsoresfrombeingbeatenorbeingchained

up.Theirmusclesmaystopworkingproperlyiftheyarechainedupforalongtime.

• Heartdiseaseanddiabetes

Peoplewithschizophreniaaremore likelytogetheartdiseaseanddiabetes(highbloodsugar

levels)thanotherpeople.

21.2 Whydopeoplewithschizophreniahaveproblemswithphysicalhealth?

There are a number of reasons why people with schizophrenia have more physical health

problemsthanotherpeople.

• Difficultyaccessingthehealthcentre

Itmaybedifficultforfamiliestotaketheindividualwithschizophreniatothehealthcentre,

eitherbecausetheyhavedifficultbehaviourorbecausetheyaretiedup.

107

• Difficultypayingforhealthcare

Familiesmayhaveproblemspayingforhealthcare,particularlyiftheindividualissounwellthat

theyorthecaregiverhavedifficultyworking.

• Sideeffectsofmedication

Medicationcancauseproblemssuchasgainingweightandsexualproblems.Sometimespeople

dounhealthybehaviours, such as chewing khat or drinking alcohol, to try to reduce the side

effectsofmedication.

• Notenoughfood

Peoplewithschizophreniamaybecomeunderweightbecausethefamilyispoorandtheydonot

haveenoughfood.

• Stigmaanddiscrimination

Sometimesthefamilyorcommunitybelievestheindividualdoesnotneedordeservethesame

nutritionorphysicalhealthcareasotherpeople.Sometimeshealthworkersdon’t takepeople

withschizophreniaseriouslyanddismisstheirphysicalcomplaints.

• Individualnotwillingorabletoeatregularly

Sometimesduetotheillnesstheindividualdoesnotwanttoeatordoesn’tfindtimetoeat

• Beinginactive

Manypeoplewithschizophreniabecomeinactive.Thiscanbeonereasonforweightgain.

• Tryingtoescapeproblemsorsocialise

People with schizophrenia may drink alcohol, chew khat or smoke to try to escape their

problemsandsocialise.

21.3 Whyisitimportanttoimprovephysicalhealthinpeoplewithschizophrenia?

Peoplewithschizophreniaaremuchmore likelytodieyoungthanotherpeople.This ispartly

due to people with schizophrenia committing suicide. However, it is mainly due to physical

healthproblemssuchasinfectionsandmalnutrition.Havingphysicalhealthproblemsmaystop

people recovering fromschizophrenia.Whenpeoplehavephysicalhealthproblems itmaybe

more difficult to get to the health centre for anti-psychoticmedication, or to return to farm

work. It istherefore importanttotryto improvephysicalhealth inpeoplewithschizophrenia.

Chewingkhatcanresultindecayoftheteeth,heartproblems,cancer,anxietyanddepression.

Both khat and alcohol make the symptoms of schizophrenia worse and make it harder to

recover.Itisthereforeimportanttosupportpeopletostopusingkhatandalcohol.

108

21.4 Howcanweimprovephysicalhealthinpeoplewithschizophrenia?


Explaintotheindividualandfamilywhatphysicalhealthproblemsarecommoninpeoplewith

schizophrenia.Givereasonswhypeoplewithschizophreniahavetheseproblems.

2. Assessphysicalhealthproblems

Assesswhatphysicalhealthproblemsorunhealthybehaviourstheindividualhasormighthave

inthefuture.

3. Problemsolvingtoimprovephysicalhealth

Youshouldthendiscusseachprobleminturnwiththeindividualandcaregiver.Encouragethem

tothinkof ideas forhowtogetaroundtheproblemusingtheproblemsolvingapproach(see

Chapter 10). Discuss the approaches they have already tried. Build on their ideas and then

suggestsomeoralloftheonesbelow,iftheyhavenotbeencovered:

a. Ensureaccesstohealthcare

Ensurethattheindividualisaccessingthehealthcentreorhospitalforphysicalhealthproblems

whentheyarise,forexampleinfectionsoraccidents.SeeChapter17.

b. Avoidalcohol,cigarettesandkhat

Encouragetheindividualnottodrinkalcohol,smokeorchewkhat.Explainthatthiswill

probablymaketheillnessworse.Askthefamilytotrytoavoidgivingtheindividualmoneyfor

alcohol,khatorcigarettes,ifpossible.Discusswiththeindividualwhethertheyneedhelptocut

downorstop.

c. Gethelpforproblemswithalcoholorkhat

Iftheindividualhasseriousproblemswithalcoholorkhatuse,thenyoushouldreferthemto

thehealthcentre.Apersonhasaseriousproblemif:

• Theyoftenappeartobeaffectedbyalcoholorkhat.Forexample,smellsofalcohol,looks

intoxicated,staggerswhenwalking,slurredspeech.

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• Becauseofalcohol,theyofteninjurethemselves,forexamplefromfallingdown,fights,or

walkingintraffic

• Theyhavephysicalsymptomsfromexcessivealcoholuse.Forexamplecan’tsleep,very

tired,can’teat,nauseatedbyfoodsmells,vomits,complainsofabadstomach,diarrhoea,

headaches.

• Theyshowsignsofdruguse.Forexample,skininfection,unkemptappearance,drymouth,

burnedlips,badorwornteeth,complainsofdukak(vividunpleasantdreams)

d. Encourageahealthydiet

Encouragetheindividualtoeatahealthydietasmuchaspossible.Beawarethatmanyfamilies

willhaveverylimitedchoiceaboutwhattheyeat.Ahealthydietconsistsofamixtureof:

• Cereals,suchasteff(injera),barleyandwheat

• Pulses,suchaslentils

• Fruits

• Vegetables

• Smallamountsofmilk,cheeseandyogurt

• Smallamountsofmeat

Makesurethepersonwithschizophreniaeatsthesameamountandtypeoffoodastherestof

the family (SeeChapter24). If youare concerned theperson is veryunderweightyou should

referthemtothehealthcentre.

e. Encourageappropriatephysicalactivity

Encouragetheindividualtodosomephysicalactivityasitisnotgoodforthemtositathomeall

day.Mostpeoplecandothisaspartoftheirday-to-dayactivities,forexamplegoingtofetch

water.However,peoplewithschizophreniashouldnotdoexcessiveexerciseasthismay

contributetowardsthembecomingunderweight.

f. Refertothehealthcentreforproblemswithsideeffectsofmedication

Youshouldreferbacktothehealthcentreiftheindividualsideeffectswhichareaffectingthe

individuals’physicalhealth.Forexample,problemswithmenstrualperiods.

110

g. Refertothehealthcentreformalnutrition

Refertheindividualtothehealthcentre,andfacilitatethemtoattend,iftheyappearvery

underweightormalnourished(seeChapter14).

h. Attendtophysicalinjuries

Iftheindividualhasanywoundsorsoresmakesurethesearewashedwithcleanwater.Ifyou

areworriedaboutthewound,forexampleifitisnothealing,refertheindividualtothehealth

centre.Iftheindividualhasproblemsmovingtheirarmsorlegsproperlybecausetheyhave

beenchainedupforalongtimeyoushouldreferthemtothehealthcentre.Youmaybeasked

tohelpthemexercisetheirarmsandlegs.

i. Attendtophysicaldisabilities

Iftheindividualhasaphysicaldisabilitydiscusswithyoursupervisorthebestwaytosupport

them.

j. Ensureaccesstothehealthextensionprogramme

TheHealthExtensionWorkershouldmakeroutinevisitstothehouseholdtocover

contraception,protectionagainstHIV,sanitation,malariaprevention,childnutritionand

antenatalcare.Iftheindividualasksforhelpwithanyoftheseissues,orifyouknowthatthe

HealthExtensionWorkerhasnotmaderoutinevisitstothehousehold,contacttheHealth

ExtensionWorker.Askhertomakearoutinevisittotheindividualtodiscusstheseissues.

4. Makeaplan


have.Setsomespecifictasksfortheindividualandfamilytocomplete.

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Followup

Makesureyourefertothehealthcentreorhealthextensionworkerifthisisrelevant.Ifyoudo

makeareferralmakesurethattheindividualattendsfortheinitialvisitandanyfollowupthat

is needed. At later visits ask about progress with healthy behaviours. If there are physical

disabilities,discusswithyoursupervisor.

21.5 Summary

• Peoplewith schizophrenia have physical health problems such as being underweight and

usingkhatandalcohol

• Physicalhealthproblemsmaybedangerous,andmakeitmoredifficulttogetwell

• Wecan improvephysicalhealthby:ensuringaccesstohealthcentreandhealthextension

worker, and giving advice about diet, exercise, alcohol and khat.

Yosef’sstory

BerhanobservesthatYosef isquiteunderweight.Yosefsayssometimesheis tootiredto

eat.BerhantellsAddisaboutthedifferentpartsofahealthydiet.Addisexplainsthatoften

theycannotgroworaffordtobuydifferenttypesofgrainsandvegetablesandtheyrarely

eatmeat.BerhantellsAddissheunderstandstheyhave limitedchoices.Theyagreethat

Yosefneedsmoresupportandencouragementatmealtimes.Berhandiscussesthe issue

withHaile.TheyagreethatYosefdoesnotneedtogotothehealthcentreatthemoment,

butifhelosesmoreweightthiswillbenecessary.

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22 Module:Dealingwithdistressingsymptoms

22.1 Whatdistressingsymptomsdopeoplewithschizophreniahave?

AswediscussedinChapter2peoplewithschizophreniacanhavefourgroupsofsymptoms:

a. Hallucinations(seeingorhearingthingsthataren’treallythere)anddelusions(believing

thingsthataren’ttrue)

b. Problemswithmotivation

c. Problemswiththinkingclearly

d. Personnotbeingawarethattheyhaveanillness

All of these symptoms can be very distressing for individuals. The extent to which they are

distressingvariesfrompersontoperson.

22.2 Whydopeoplewithschizophreniahavedistressingsymptoms?

Distressing symptoms are part of the illness of schizophrenia. Medication usually helps to

reducehallucinationsanddelusions,butsometimestheycancontinueevenwhenanindividual

is taking themedication regularly. It is common for problemswithmotivation and problems

withthinkingclearlytocontinueevenwhenanindividualistakingtheirmedicationregularly.

22.3 Whyisitimportanttoreducedistressingsymptoms?

Aswellasbeingdistressingfortheindividual,thesesymptomscanbedisabling.SeeChapter4.

Havingsymptomscanmakegettingbacktousualactivitiesmoredifficult.

22.4 Howcanwehelptoreducedistressingsymptoms?

Principles

Atalltimes,thefocusshouldbeonempoweringtheindividualtotakechargeofmanagingtheir

ownillness.Thegeneralapproachtoreducingsymptomsis:

• Supportingtheindividualtotakemedication(seeChapter20)

• Reducingstressbyimprovingtheenvironment,forexampledealingwithhumanrights

problems(SeeChapter19),orimprovingcopingstrategies(seeChapter23)

However,peoplewithschizophreniaoftencontinuetoexperiencedistressingsymptomsdespite

takingthesesteps.Itisthereforeimportanttohavespecificwaystohelptocopewiththem.To

dothis,followthesesteps.

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1. Reviseinformationaboutsymptoms

Revise what kinds of symptoms people with schizophrenia experience, relating them to the

symptomstheindividualhas


Explainwhyitisimportanttoreducedistressingsymptoms.Emphasisethatthisisachancefor

theindividualtofeelbetter.Highlightthatproblemswithmotivationandthinkingclearlycanbe

difficulttoovercome.

3. Assesssymptoms

Findoutwhichisthemostdistressingsymptomandfocusonthatfirst.Discussthefollowing

issuesrelatingtothatsymptom:

• Howoftenithappens

• Howitaffectstheperson

• Whatmakesitworse,forexamplehavinganargumentwithparents

• Whatmakesitbetter,forexampletalkingtoabrotherorsister

4. Suggestpotentialcopingstrategies

a. Hallucinations

• Changethelevelofactivity

Tryrelaxation(seeChapter23),ortakingawalk

• Doadistractingactivity

Talktofamilymembersorneighbours,listentotheradioorsingasongorhum

• Talktoyourselfinapositiveway

Forexample,‘Icancopewiththis’

• Ignorethehallucinationasmuchaspossible

b. Delusions

• Suggestthattheindividualcheckstheirideasofrealitywithsomeonetheytrust,forexample

thecaregiver

• Iftheindividualdiscussestheirdelusionswiththecaregiver,thecaregivershouldlistento

them.Thecaregivershouldnottrytoargueorreasonwiththem.

c. Problemswithmotivation

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• Remindthefamilythatthepersonisnotlazyoruseless,buthasanillnessthatmakesit

difficulttofindtheenergyorwillpowertodotheirusualactivities.

• Encouragetheindividualtohavearegularroutine,e.g.gettingupataregulartime,eating

whenotherseat(seeSection24.4formoredetail)

• Encouragethefamilytoinvolvetheindividualinsocialandcommunityactivities,for

exampleattendingchurch(seeChapter26)

• Encouragetheindividualandfamilytothinkaboutthefuturewithhope.Askthemtothink

abouttheprogressthattheindividualhasalreadymade.

d. Problemswiththinkingclearly

• Whenthepersonwithschizophreniaisdoingsomething,forexamplepreparingfoodor

havingaconversation,trytoreducedistractions.Forexampleturnofftheradioandreduce

backgroundconversations.

• Tryactivitiesthatimproveconcentration,forexampleweavingorpraying

• Remindthefamilytogivetheindividuallotsoftimetodosmalltasksandnottobecome

impatient.

• Practiceactivitiesmanytimesuntiltheybecomeeasier

5. Discusscopingstrategiesthatareunlikelytobehelpful.

Theseinclude:Angrilytellingthevoicestogoaway;Drinkingalcoholorchewingkhat;Sleepinga

lot;AvoidingcontactwithotherpeopleandStoppingmedication.

6. Makeaplan

Helptheindividualtoselectacopingstrategyorstrategies,involvingthecaregiverinthe

discussion.Youcanalsouseaproblemsolvingapproach(seeSection10.5).Asktheindividualto

practicethecopingstrategytheyhavechosenafewtimes.Asktothemtothinkabouttimes

whenitispossibleornotpossibletousethestrategy.

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Followup

Followupprogresseverytimeyouseetheindividual.Askwhetheritishelpingornot.Ifitisnot

helping,makechangestothestrategyortryadifferentstrategy.

22.5 Summary

• Manypeoplewithschizophreniafindtheirsymptomsdistressing,evenwhentheyaretaking

medicationregularly.

• Havingdistressingsymptomscanmakeitmoredifficulttogetbacktousualactivities

• We can try to reduce distressing symptoms by supporting individuals to takemedication,

andreducinglifestress.

• We can also suggest coping strategies such as: doing a distracting activity (for

hallucinations), discussing ideas with a trusted person (for delusions), having a regular

routine (for motivation problems) and reducing background noise (for problems thinking

clearly)

Sara’sstory

Saraisayoungwomanwhobecameunwellwithschizophreniaoneyearago.Shecanstill

hearvoicesthatcommandhertodothings.Sometimesshebelievesshehasspecialpowers

toreadotherpeople’sminds.Herhusband,Alemu,usuallytellsSarathatsheisstupidor

madwhenshetalksaboutthis.Theseproblemsareabitbettersinceshestartedtakingthe

medication,buttheyhavenevercompletelygoneaway.BerhanasksSaratodescribethese

problemsandtotellherhowoftentheyhappen.SaratellsBerhanthattheproblemsget

worsewhenshedoesn’ttakethemedicationandwhenshegetsstressed.Aftersome

discussion,Saraagreestotrylisteningtotheradiowhenthevoicesnextbecomeverybad.

Alemuagreesthatitdoesn’tseemtohelpwhenheinsultsSaraortellsheroffwhenshetalks

aboutherspecialpowers.Alemuagreestotrynottodothisinfuture.BerhanasksSaraand

Alemutotrytheseideasandthattheywilldiscusshowitwentatthenexthomevisit.

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23 Module:Managingstressandanger

23.1 Whatproblemsdopeoplewithschizophreniahavewithstressandanger?

Stressiswhatpeopleexperiencewhentheyfeeloverwhelmedbythethingshappeninginlife.

Itmakespeople feel tenseandanxiousand that they cannot copewith thedifficulties they

face.Weallexperiencestressinourdailylives.Howeverwhensomeonehasschizophreniathis

will increase the stress of the individual and their family members. Stress can have many

effects on people,includingchangesinthebody,emotions,andbehaviour.Inparticularstress

can sometimes cause people with schizophrenia to become angry. Anger can sometimes

causeanindividualtoharmotherpeopleorthemselvesordamageproperty.

23.2 Whydopeoplewithschizophreniahaveproblemswithstressandanger?

Differentpeoplefinddifferentthingsstressful.Stresscanbecausedby:

• Importantlifeeventsthathappensuddenly,forexampleadeathinthefamily,

• Ongoingdifficultsituations,forexamplefinancialproblemsorfamilyconflict.Thesethings

maybemorecommonwhensomeoneinthefamilyhasschizophrenia.

23.3 Whyisitimportanttoreduceproblemswithstress?

Stress,alongwithvulnerability, isoneofthefactorsthatdetermineshowsevere the illness is

andhowmanyrelapses thereare (seeSection2.3). Learning to manage stress is therefore

important for thewellbeingof the individualand tohelp themto recover.Angercancause

relationshipproblemswithin the family. If a personwith schizophrenia becomes aggressive,

the family may feel it necessary to tie them up in order to protect other people and the

individual.Inordertopreventthishappeningitisimportanttolearnhowtopreventanddeal

withanger.

23.4 Howcanwehelptoreduceproblemswithstressandanger?

Principles

Problemswithstressandangercanbereducedby:

• Preventingstressandangerhappeninginthefirstplace

• Givingwaystodealwithstressandangerwhenitdoeshappen

1. Giveinformationaboutstressandanger

Explainwhatstressandangerareandwhytheyhappen

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Explainwhyitisimportanttoreducestressandanger

3. Assessproblemswithstress

Discusswhatsituationswerestressfulinthepastormightbestressfulinthefuture.

4. Discusswaystopreventstress

Discuss how the individual can avoid feeling stressed in the future. Use the individual and

families’ideasandsuggestthefollowingiftheyhavenotbeencovered:

a. Avoidortrytochangesituationsthatwerestressfulinthepast

If a situation was stressful before, it is likely to cause problems for the person when

they are in the same situation again. Suggest to the individual that they avoid these if

possible. For example if the individual finds it difficult to attend a wedding, they could

avoid going to the ceremony. Or suggest that they change the situation to make it less

stressful.Forexample,theycouldmeetthebrideandgroomatadifferenttime.

b. Haveregularactivities

Stress canbereduced if the person has the right balance of activityandrest.Peoplewith

schizophrenia usually find it helpful to have some structure to the day. Try to involve the

individualinmeaningfulactivities,suchashousework,farmworkordrinkingcoffeewithothers.

SeealsoChapter24.

c. Haveahealthylifestyle

Eatingenoughnutritiousfood,gettingenoughsleep,doingexerciseandnotdrinkingalcoholor

usingkhatcanallhelptoreducestress.SeealsoChapter21.

d. Havereasonableexpectations

Havinghighexpectationsoftheindividualcanbestressfulforhimorher.Encouragethefamily

tohavereasonableexpectationsandforrealisticgoalstobeset.

e. Trynottobecritical

It is importantnotbecriticalof the individualand forthemnottobe criticalofthemselves.

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Encouragementshouldbegiven forany task that the individualdoesandanysmall changes

should be acknowledged. Think of positive things about the person and remind them of

these when theyare feelingnegative.Askthefamilytodothesame.

5. Discusswaystodealwithstress

Discuss how the individual deals with stress when it does happen- is it helpful? Use the

individualandfamilies’ideasandsuggestthefollowingiftheyhavenotbeencovered:

a. Allowtheindividualtodiscusstheirfeelings

Letting theperson talk about their feelings oftenprovides some immediate relief and can

keep stress from buildingup.Stressmaybeanearlywarningsignofarelapse.Iftheperson

withschizophreniacantellyouorarelativewhenhe/sheisfeelingstressed,therelapsemay

beprevented.SeeChapter30.

b. Allowthefamilytodiscussthesituation

Discuss the situation with the family and try to find possible solutions to the problem

causing thestress.Usetheproblemsolvingapproach(seeSection10.5).

c. Userelaxationtechniques

Relaxation techniques can help in reducing stressandsleepingwell.Youcanteachboththe

individualandfamilythesetechniques.Itisbesttopracticeeveryday.

ControlledBreathing

• Explain that when we become stressed our breathing rate often speeds up. Slowing

downourbreathingcanhelpusto feelmorecomfortable.

• Showthe individualandfamilyhowtobreathe in for4counts,hold for2countsand

breatheoutfor6counts.Youcancloseyoureyesifyouwish.

• Practicethisexerciseinthesessionfor5or10minutes.

• Askforfeedbackfromtheclientandfamilyabouthowtheyfoundtheexperience

anddiscussanydifficulties.

• Discuss that learning a slow breathing technique ismore difficult than it first seems,

and requires a lot of practice. You could also suggest some ways of making the

processeasier,forexample:

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o Initially,onlypracticethebreathingexercisewhenyou’renotfeelingstressed

o Explainthatsomepeopledescribefeelingmorestressedwhentheyfirstbeginusing

controlledbreathing.Itis importanttocarryonwiththetechnique,becausethis

feelingofstresswilldecreasewithpractice

o Practiceinacomfortableenvironment.Lyingdowniseasier thansittinginachair.

Chooseaquietdimly litroom,andtrytopracticeata timewhentheywillnotbe

disturbed

o Thebreathingpatternmaybehardforsomepeoplesoyoumightneedtoadjustit

(e.g.breatheinfor3counts,holdfor1andbreatheoutfor5,orbreatheinfor3

counts,holdfor1andbreatheoutfor3counts)

Muscle relaxation

The aim of this form of relaxation technique is to help the person relax by releasing

muscle tension with each outward breath. It builds on the controlled breathing

techniquedescribedabove.Thisiswhatyoushouldsay:

“Focus on your breathing…Just focus on each breath, in and out...As you breathe in,

tensethemusclesinyourfeetastightasyoucan.Asyoubreatheoutrelaxyourfeetand

letgoofthetension”

You then go through each specific areas of the body in turn, continuing with the

ankles and working upwards. Repeat the instruction to tense the particular area as

you breathe in and release any tension as you breathe out. Continuethisexercisefor

10-15minutes.

d. Religion

Formany people religion gives comfort anddirection to their lives. Religious beliefs,prayer

andattendingchurchormosquecanhelppeoplecopewithstress.Also, religiousgroups,for

examplemahaber,canbea sourceofsocialsupport,whichcanreduce feelingsofisolation

andstress.

e. Encouragetheindividualtotalkaboutthemselvesinapositiveway

Encourage the person with schizophrenia to stop talking to themselves ina negativeway,

forexample“This is awful”.Encouragethemtotrytalkingtothemselvesinapositiveway,

forexample“ThisisachallengebutIcanhandleit”or“Iamgoingtodo thebest I can”.

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f. Keepasenseofhumour

Many peoplewith schizophreniahave agood senseof humour.Whenastressful situation

happens, try to say something thatwillmake the individual smile, toavoid them being

totallyoverwhelmedbythesituation.

g. Exercise

Physical activity has a positive effect on reducing stress, lifting mood and improving sleep

patterns.Peoplewithschizophreniashouldtry todosome lightphysicalactivityeveryday, for

examplewalking.Howevertheyshouldnotdostrenuousactivitiesorexerciseforlongperiodsas

thismaycontributetoweightloss(seeSection21.2).

6. Discussunhelpfulwaystodealwithstress

These include: smoking,drinkingalcohol, chewingkhat,notspending timewithotherpeople,

beingverybusyandgettingangrywithotherpeople.

7. Discussproblemswithanger

Discusswhatsituationshavemadetheindividualfeelangryorwhatmightdointhefuture.

8. Discusswaystopreventanger

Somewaystopreventangerinclude:

• Trytounderstandwhatmakestheindividualangryandtrytoaddressthisproblem

• Preventanddealwithstress(seeabove)

• Developself-confidenceintheindividual(seeChapter28)

• Makesuretheindividualisaccessingthehealthcentreandtakingtheirmedication

• Trytoavoiddrinkingalcoholorusingkhat;thesecanreducepeople’sangercontrol.

9. Discusswaystodealwithangerwhenithappens

Suggesttheindividualtriessomeorallofthefollowingtechniqueswhentheyfeelangry:

• Leavethesituationwhichiscausinghimorhertofeelangryassoonaspossible

• Noticethefactthatheorsheisangry.Stopdoingwhatevertheyweredoingandeitherwalk

aroundorsitcalmlyforafewminutes.

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• Release the stress in away inwhich there is least possible harm to self, others, and the

environment,forexamplepunchingapillow.

• Dorelaxationtechniques,forexamplecontrolledbreathing.

• Ifpossibledosomethingdistracting,likewateringthekitchengarden

• Talktosomeoneaboutwhatismakingthemfeelangry.

If he or she became aggressive, after the situation has passed, suggest that individual:

Apologisestoanyoneinvolvedandtriestotidyuporfixanythingthatwasdisturbed

10. Makeaplan

Help the individual toselect strategies forpreventingwithanddealingwithstressandanger.

Involvethecaregiverinthediscussion.

Followup

Remembertoreviewwhichofthesewaystodealwithstressorangerwerehelpful,andwhich

werenot.Suggesttotheindividualandfamilytofocusonthehelpfulonesinfuture.

23.5 Summary

• Everyone experiences stress sometimes, but it is more common in people with

schizophrenia.Stresscanleadtoanger.

• Stresscanmakesymptomsworseandmakerelapsemorelikely

• Waystopreventstressinclude:avoidstressfulsituations,healthylifestyle,havereasonable

expectations

• Waystodealwithstressinclude:relaxation,religionandtalkingaboutproblems

• Ways to prevent and deal with anger include: developing self-confidence, leaving the

situation that ismaking themangry, and releasing theanger in away that isnotharmful

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24 Module:Improvingdaytodayfunctioning

24.1 Whatproblemsdopeoplewithschizophreniahavewithday-to-dayfunctioning?

Peoplewithschizophreniamayspendthedaydoingnothinginparticular.Thiscanbedistressing

forfamilymembersandtheymayseethepersonasbeing‘lazy’.Peoplewithschizophreniamay

also have problems doing specific tasks. They may have problems with self-care, including:

Cleaning teeth,Washing theirbodyandhair,Eating food inapropermanner,Washinghands

beforeandaftereating,CuttingnailsandUsingthetoiletproperly.

Theymayalsohaveproblemswithhouseholdtasks,including:Preparingfood,Preparingcoffee,

Cleaningthecookingandservingutensils,Fetchingwater,Goingtothemillhousetogetgrain

ground,Washingclothes,Cleaningtheanimalarea,Preparinglocalbeverages,forexampletella,

forthehousehold,fencingandrepairingthehouse.

24.2 Whydopeoplewithschizophreniahaveproblemswithdaytodayfunctioning?

Peoplewithschizophreniamayhaveproblemsdoingthesetasksforavarietyofreasons:

• Theillnessgivesthemproblemswithmotivation

• Theillnessgivesthemproblemswiththinkingclearly

• Medicationsideeffects,suchasdrowsinessorshakinghands,makesometasksdifficult

• Thefamilydoesnotletthemdotasks,forexamplepreparingthecoffee,becausetheyare

worriedtheywilldoitwrong.

24.3 Whyisitimportanttoimprovedaytodayfunctioning?

• Keepthepersonengaged inuseful tasks

• Improvememory,attentionandconcentration

• Distract fromtroublesomesymptoms likehallucinationsanddelusions.

• Improve their self-confidence

• Reducestigmatowardsthem

• Improvesocialinteractions

24.4 Howtoimproveproblemswithdaytodayfunctioning?

Principles

• Establishwhatisnormalforthehousehold.Forexample,checkhowoftenotherfamily

membersgetwashed,andwhethersoapisused.

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• Establishwhatisnormalfortheindividual.Forexample,checkwhetherfetchingwaterwas

expectedofthemwhentheywerewell.

• Setrealisticgoalsandaimforgradualimprovement.Theindividualwillneedmoretimethan

usualtodothetasks

• Involvethefamilyateverystageoftheprocess.Theaimisforthemtobeabletosupport

theindividualtodothetaskwhenyouarenotthere.

• Theindividualwilloftenknowhowtodothetask,butmayhaveproblemsrememberingor

beingmotivatedtodoit.Focusongettingtheindividualbackintoaroutine.

• Askthefamilymemberstogiveencouragementwhenanyofthetasksaredone

• Youmaynoticethatthereareproblemswithhygieneandsanitationwithinthehousehold

thatarenotonlyrelatedtotheindividuals’illness.Ifthisisthecaseyoucoulddirectsomeof

youradvice,forexampleabouttheimportanceofwashing,towardsotherfamilymembers

too.Youcanalsoconsideraskingthehealthextensionworkertovisittodiscusssanitation,if

theyhavenotalreadydoneso.


Explaintotheindividualandfamilythatproblemswithdaytodayfunctioningarecommonin

peoplewithschizophrenia.Givesomeofthereasonswhypeoplehaveproblemsandwhyitis

importanttoimprovethesituation.

2. Assessforproblemswithselfcare

Askwhatproblemstheindividualhaswithdaytodayfunctioning,usingtheDaytoDay

functioningProgressForm(Form16).Asktheindividualwhytheyarehavingdifficulty.Focuson

thetaskswherethereisaproblem.

3. Giveadviceonhowtoimproveeachselfcaretask

Foreachtask:

• Discusswhyitisimportanttodothetask.Sayitishealthytokeepyourteethandbody

clean.Alsoitwillmakeiteasiertosocialisewithfriendsandfamily.

• Checkwhatthefamilynormallydoesandwhatisexpectedoftheindividual

• Agreeatimewhentheindividualwilldothetaske.g.cleanteethstraightafterwaking

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• Iftheindividualisverydisorganisedyoumayneedtotalkthrough,ordemonstrate,the

stagesinthetask.Ifappropriate,asktheindividualtohaveagoatdoingthetask

• Tobeginwiththecaregivermayneedtowatchtheindividualdoingthetask

Tasksmayinclude:

a. Cleaningteeth

b. Washing

c. Groominge.g.braidinghair,cuttingnails.Thefamilyshouldsupervisethefirst few

attemptsatcuttingnailstoensurethathe/shecutsit safelyandneatly.

d. Usingthetoilet,washinghandsandmenstrualhygiene.Thisisasensitiveissueandyou

mustbecarefulwhenyoudiscussthistopicsoasnottooffendtheindividualorthe

family.Discussthedisposalandwashingofsoiledclothes.

e. Dressingandtakingcareofclothes.E.g.notwearingtoofewortoomanyclothes.

f. Healthyeatinghabits.Ensuretheindividualisbeinginvolvedinmealtimeswiththerestof

thefamily.Discusstheimportantthingstodoandnotdowhilsteatinge.g.

o Washhandsbeforeeating

o Onlyeatwiththerighthand

o Donotlickfingers

o Donotreachacrossotherpeople

o Washhandsaftereating

4. Assessforproblemswithhouseholdtasks

Askwhathouseholdtaskstheindividualfindsdifficult.Referbacktoanyproblemshighlightedin

theneedsassessment.Trytounderstandfromtheindividualwhytheyarenotdoingthetask.

5. Giveadviceonhowtoimprovehouseholdtasks

Foreachhouseholdtaskwherethereisaproblem,gothroughthefollowingsteps

• Discusswhatisexpectedoftheindividual

• Talkthrough,ordemonstrate,thestagesinthetask

• Ifappropriate,asktheindividualtohaveagoatdoingthetask

Thehouseholdtasksmightinclude:

• Tidyingthesleepingarea,andfoldingtheblanket

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• Keepingtheroomtidy.Theyshouldbeencouraged to pick up fallen items and

replacethem.Theyshouldcleanthefloorifsomethinghasbeenspilt.

• Sweeptheroom everyday.

• Cleaningand cuttingvegetables

• Fetchingthewater

• Preparingcoffee

• Lightingthefire

6. Encouragementandpositivefeedback

Foreachself-careandhouseholdtask,askthefamilytoencouragetheindividualtodothetask

andgivethempositivefeedbackwhenit isdone.Tellthefamilytheindividualwillneedmore

timethanusualandwillneedbreakswhilstdoingthetasks.

7. Creatingadailyroutine

Once the individualhas someability todo the individual tasks, you shouldhelp them toget

intoadailyroutine.Thedailyroutine shouldbea combinationofwork,rest,leisure,self-care

andsleep.Thefollowingisanexampleofadailyroutine.

12:00:Wakeup,attendtotoilet,washface,brushhair

12:15:Tidybed

12:30:Sayprayers

1:00:Eatbreakfast

1:15:Washplateandglass,tidytable

1:30:Milkthecowsandfeedthem

2:30:Fetchwater

3:30:Restortea/coffeebreak

4:00:Householdactivitieslikecooking,tidyingrooms

6:30:Lunch

6:45:Washplate,glassandtidytable

7:00:Rest

8:00:Washclothes

9:00:Weavingcloth

10:00:Tea/coffeeandconversewithfamily,friendsorneighbours

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11:00:Feedthecows

12:00:Householdtaskslikecooking

2:00:Eatdinner

2:30:Washplateandglassandtidytable

3:00:Listeningradioortalkingwithfamilymembers

4:00:Sleep

You canmake a similar routine for the person you are working with after consideringtheir

age, sex, needs andwishes.Give the individual guidanceonhow todo all the tasks.Ask the

caregivertobe involvedandencourage thepersonstickto theroutineas faraspossible.Itis

usuallyhelpful towrite itdown for future reference,even if the individualand family cannot

read.

8. Giveadviceonmanagingmoney

• Thefamilymayneedtohelptheindividualtorecognizethetypesofcoinsandnotes.

• Familymembersshouldencouragethepersontopurchasethingsrequiredforthefamily

byinitiallygiving theexactamounttobespent.Later,thepersonshouldbeencouraged

topaytheappropriateamount, collectthecorrectbalanceandreturnhomewiththe

items.

9. Makeaplan

Decidewhich task the individualand familywill trybefore thenext session.Agreewhateach

person’sroleis.Iftherearemanytasksthatarecurrentlydifficult,focusontheonesthatarea

priorityfortheindividualandfamilye.g.gettingdressed.

Followup

Remembertoreviewprogressatthenexthomevisits,referringtotheDaytoDayFunctioning

progressForm.

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24.5 Summary

• People with schizophrenia often have problems with day to day functioning, such as

washingthemselvesortidyingthehouse

• Problemsareduetotheillness,themedicationandlowexpectationsofthefamily

• Wecanimprovedaytodayfunctioningbybreakingdowntasksintosmallsteps,asking

thefamilytogivelotsofencouragement,andmakingadailyroutine

Yosef’sstory

YosefandAddistellBerhanthatYosefdoesnotwashandsometimesdoesn’tdressproperly.

BerhandiscusseswithYoseftheimportanceofwashinganddressingproperly.Yosefagrees

thismightbestoppinghimmakingfriendsagain.WithAddis’help,Berhanbreaksdownthe

stepsofwashinganddressingintosimplesteps.TheyagreethatAddiswillprompthimtodo

these steps every morning, and will give him lots of praise if he does them by himself.

Together they thinkofadaily routine that Yosefwill try to follow.Berhandoesn’twrite it

downasthefamilycannotread,buttheyagreetotryandrememberit.

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25 Module:Improvingthefamilyenvironment

25.1 Whatproblemsdopeoplewithschizophreniahavewiththefamilyenvironment?

Problemswithinthefamilyarecommonwhenapersonhasschizophrenia.Theremaybemany

argumentsorevenviolencebetweenfamilymembers.Sometimesthefamilyareverycriticalof

thepersonwithschizophrenia.Orcertain familymembersmaybe involved ineverythingthat

the individualdoesbecausetheyareworriedtheycannotdoitalone.Thismeansneitherone

hastimetothemselves.Alltheseproblemssometimesmeanthatthefamilybecomeslessgood

at caring for the individual. It can also be very stressful for the caregiver, who may find it

difficulttocope.Lookingafterchildrencanbestressfulandtiringforanyparent,butespecially

whentheparenthasschizophrenia.Theymayfeeltheyarenotabletolookafterthechildren

properly.

25.2 Whydopeoplewithschizophreniahaveproblemswiththefamilyenvironment?

Thefamilyarethemaincarerswhenapersonhasschizophrenia.Thiscanputalotofstresson

the family.The individualmayhavedisruptivebehaviours,whicharedifficult tocontrol.They

mayalsonotbeworking,whichputsextrastrainonthefamily.Thecostsoftreatmentmayalso

beasourceofstress.Thefamilymaynotunderstandwhytheindividualcannotworkandhas

not recovered. All these problems can mean the family environment becomes stressful and

unpleasant(SeeChapter5).Parentswithschizophreniamayhaveproblemslookingaftertheir

childrenbecause theyhavemanysymptomsorbecauseof sideeffectsof themedication (for

exampledrowsiness).

25.3 Whyisitimportanttoimprovethefamilyenvironment?

When there areproblemswith the family environment it usually takes longer for theperson

with schizophrenia to recover. It is therefore important to help the family to support the

individualbetter.Also,improvingthefamilyenvironmentmeansthefamilyhaslessstressand

worry.It isempoweringfortheindividualtostartlookingaftertheirchildrenagain.Doingthis

mightimprovetheirself-esteemandmakethemfeelhappythattheyareparticipatinginfamily

life.It isalsobetterforthechildren’sdevelopmentiftheparentsgiveproperloveandcareto

thechildren.

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25.4 Howcanwehelptoimprovethefamilyenvironment?

Principles

Before you can start improving the family environment it is important to have a good

relationshipwith the family (seeChapter 11). Be awareof the fact thatdiscussing the family

environmentmaybeupsettingfortheindividualandfamily.


Explain why it is important for the person with schizophrenia to have a good family

environment.

2. Understandproblemsinthefamilyenvironment

Discusswiththeindividualandfamilywhatproblemsthereareinthefamilyenvironment.For

examplewhether there are oftendisagreements or conflict. You should also check the latest

needsassessment.

3. Considerhowwellthecaregiveriscoping

SeeChapter15forhowtosupportthecaregiveriftheyarenotcopingwell.

4. Giveadviceonhowtoimprovethefamilyenvironment.

Tryandcoverallthefollowingpointswiththefamily.Relatethepointstothespecificissuesthe

familyhasraised.

a. Haveappropriateexpectations

Oncetheworstsymptomshavegone,thefamilymayexpectthepersonwithschizophreniato

getbacktotheirusualactivitiesstraightaway.The family oftenfeels disappointed when the

individual is unable todo so.Theindividualmayinactive,unmotivatedandmayneedtosleep

morethanusual.Ortheymayberestlessandunabletoconcentrateonsmall tasks.Givethe

familythefollowingadvice:

• Encouragethemtohaverealisticexpectationsofwhattheindividualcando.

• Encouragethemtoviewtheindividualashavingaseriousphysicalillness,which requires

alongtimeforresting.Howevertheycaneventuallyrecover.

• Discouragethemfromthinkingtheindividualisjustbeinglazy.

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• Encouragethemtocomparethe individual’scurrentbehaviorwithhow itwasamonthor

moreago.Thishelpsthefamilymemberstoseethepositivechanges.

b. Setlimits

Tell the familythat justbecausethe individual is ill, the familydoesnotneedtodowhatever

theyask. Instead,helpthemtoset limitsontheunacceptablebehaviors.

• Help them to decide which behaviors are intolerable (for example violence) and which

are irritating but tolerable (for example, not eating in the correct way). When the

intolerablebehavioroccurs, theymust immediately lettheindividualknowthatthisisnot

acceptable.Theaimistostopapatternofbehaviorsfromstarting.

• Advisethefamilynottodiscusswiththeindividual thereasonsforsettingthe limitorhow

they feel about it. Tell them to only state that the behavior is unacceptable, without

explainingwhy.

• Advise the family that the individualshouldbeencouraged to behave inaway that is

usualfortheirage.Forexample,anadultshouldnothave tantrums.

• Tell the family thatitwillbedifficultatfirsttosetlimits.Itmaytakeanumberofweeks.

Encouragethemnottogiveuptrying.

• Tell the family that they shouldnot ignore behaviors such as suicidal threats or violence.

SeeChapter18forhowtoaddressthesesituations.

• When the individual behaveswell, advise the family to reward them. This can be through

givingfood,allowingthemtodoafavouriteactivity,orthroughsmiling,pattingandpraising

them.Askthefamilytothinkaboutwhichrewardisthemostuseful.

• Whenthe individualdoesnotbehavewell, the familyshouldstoprewardinghimorher. If

possible, the individual should be taken away from the others for a short period and

returned when the individual is behaving well again. For example, when the individual

disturbs others by shouting, then he or she should be taken to another room and not

spokentountilhestops it.Howeveritmaybedifficulttodothiswhentheindividualisvery

unwell.

c. Reducestress

Remindthefamily thattheindividualshouldnotbeputunderalotofstress.Use thestress-

vulnerabilitymodel tohelpexplain(seeSection2.3).

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• Tell the family to try and reduce arguments and nagging behaviours (e.g. constantly

commentingnegativelyaboutwhatthepersonisdoing).

• Tellthefamilynottobeverycriticaloftheindividualorhostiletowardsthem.

• Advise familymembers against talking about complex and emotional topicswhilst the

individualisthere,forexamplediscussingproblemswithmoney.

• Advisethemthatbeingveryenthusiasticorshowinglotsofconcerncanbeupsettingfor

theindividual.Askthemtotryandreducethesebehaviours.

• Advise them that iftheindividualwantstobealone the family shouldallow it.Theydo

notneedtobeinvolvedineverythingtheindividualdoes.

d. Improvecommunication

• People with schizophrenia often do not reply straight away when they are spoken to.

Advisethefamilymemberstoavoidspeakingontheindividual’s behalfwhenthisoccurs.

Advisethemtowaitfortheindividualtorespond.

• Advisethefamilytoavoiddetailedconversations,whichtheindividualmay findconfusing.

e. Getthefamilyroutinebacktonormal

Discuss with the family the problems that comewhen the individual is the centre of their

lives. Tell them that since schizophrenia is a long-term illness, after some time they may

becometoostressedtobeabletolookafter the individual.Theymayalsodevelopproblems

of their own.As far as possible, encourage them to startagain the daily routines that they

hadbefore the illness. Advise them to thinkabout the needsof other familymembers, for

examplechildrenorsiblings.

f. Strengthensocialnetworks

Sometimes family members think that they should not worry other people with their

problems. Theymayalsoworryaboutthereactionsofothers.

• Discuss with the family the benefits of discussing their problems with others like

relatives, friends, neighbours, religious or community groups. This may help to reduce

theirdistress. Italsohelpsthemtothinkofnewandbettersolutionstotheirproblems.

• Tell the familymembers that theywill notbe able tocare for the individual for a long

timeunlesstheylookafterthemselvesaswell.

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g. Treattheindividualwithrespect

Discuss the importance of respecting the individual as an adult who can make decision for

themselves

5. Discussunhelpfulcopingstrategies

Sometimes family members do things that are not helpful or may even make the family

environmentworse.Theseinclude:

• Thefamilymaytrytopersuadetheindividualthattheirunusualideasarenottrue.This

mayleadtoargumentsand angryresponsesfrombothsides.

• Evenwhenitisclearthattheindividualdoesnotmakesense,familymembersmaytryto

findameaningfulmessageinwhatthepersonissaying.

• Sometimes the family members ignore the symptoms and pretend the illness is not

important.Thisisunhelpfulwhenthesymptomsareverybad.

• Familymembersmayconstantlysupervisetheindividual,astheyarenotsurewhatthey

willdonext.Thismakesthefamilymemberfeelmoreincontrol.However, it isdifficult

forthefamilytomaintain this constantsupervisionfora longtime.

• Theneedsofotherfamilymembersareignoredbecausetheneedsoftheindividualareso

great. This may mean that other family members feel uncared for and problems with

familyrelationshipshappen.

6. Giveadviceonhowtoimproveparenting

• Whentheindividualiswell,encouragethemtospendtimewiththechildrenandtotakeon

theirusualparentingtasks.Forexample,helpingthechildrentodressandwash.

• Discusswiththefamilyhowtheycansupporttheindividualtogetbacktotheseactivities.

Askthefamilytogiveencouragementwhentheindividualdoestheactivities.

• Ifyouareconcernedaboutthesafetyofthechild, informyoursupervisor(seeChapter14

andChapter35).

7. Makeaplan

Askthefamilytoconsiderwhatspecificthingstheywilltrytododifferently.

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Followup

Check how for progress at the next home visit. Ask what the family tried, and how easy or

difficultthiswas.Asktheindividualandfamilyifthefamilyenvironmentfeelsanydifferent.

25.5 Summary

• Sometimesthereareproblemswith inthefamilywhenapersonhasschizophrenia.These

includethefamilybeingtoocriticalorover-involvedintheindividual,ortherebeinglotsof

conflict

• Problemsinthefamilyenvironmentworsenillnessandcausestressforcaregivers

• Ways to improve the family environment include: setting limits, having appropriate

expectations,reducingstress,improvingcommunicationandgettingthefamilyroutineand

sociallifebacktonormal

• Waysto improveparenting include:whentheyarewellencouragethe individualtospend

time with the children and ask the family to support the individual with this

Yosef’sstory

YosefandAddisagreethatthereare lotsofargumentswithinthehousehold.Theyusually

argueaboutthefactthatYosefisstillnotworking,eventhoughinsomewaysheisbetter.

Yosefalsocomplainsthatheneverhasanytimealone.

Berhanhelpsthemtodiscussthistogetherinacalmway.Shesuggeststhatthefamilyneed

tohaverealisticexpectationsofYosefandthatitmighttakealongtimeforhimtogetback

to his previouswork. Addis agrees that shewill try not to nag Yosef. They discuss that it

might be useful for Yosef to spendmore time alone during the day, at least whilst he is

feelingwell.

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26 Module:Takingpartincommunitylife

26.1 Whatproblemsdopeoplewithschizophreniahavetakingpartincommunitylife?

It iscommonforpeoplewithschizophreniatohaveproblemsdoingtheusualactivities inthe

community.Peoplemayhaveproblemswith:

• Attendingweddingsandfunerals

• Drinkingcoffeewithfriendsandneighbours

• Visitingrelatives

• TakingpartinEdirmeetings

• ParticipatinginthepracticalactivitiesofEdir

• Participatinginkebelemeetings

• Attendingchurchormosque

• Participatinginreligiousgroups,suchasmahaberorlika

• Goingtomarket

• Participatinginothercommunityorganisations,suchastheWomen’sassociation

26.2 Whydopeoplewithschizophreniahaveproblemstakingpartincommunitylife?

• Theillnessmakesthemunmotivatedtogooutside

• Theillnessgivesthemproblemswithsocialskills,suchasdifficultiesstartingaconversation

ortakingturnstospeak

• Medicationsideeffects,suchasdrowsiness,makeitdifficulttogettheenergytowalk

somewhereandsocialise.

• Thefamilydoesnotlettheindividualattendcommunityeventsbecausetheyareworried

theywillbehavestrangelyordosomethingembarrassing

• Communitymembersmayhavestigmatisingattitudestowardspeoplewithschizophrenia.

Thismeanstheymayignoretheindividual,notallowthemtoparticipateinactivities,not

respecttheiropinionorevenshoutnamesatthem.

26.3 Whyisitimportanttotakepartincommunitylife?

• Tofeelpartofthecommunity

• Improvetheirsenseofwell-being

• Improvetheirself-confidence

• Reducestigmatowardsthem

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• Reducedburdenonthefamily

• Keepthepersonengaged inuseful tasks

• Distract fromdistressingsymptoms likehallucinationsanddelusions.

26.4 Whatcanwedotohelppeoplewithschizophreniatakepartincommunitylife?

Principles

• Focusontheareaswherethereareproblems,andwhichareimportanttotheindividualto

change

• Establishwhatisnormalforthehouseholdandtheindividual


theindividualtodotheactivitieswhenyouarenotthere.


Explaintotheindividualandfamilythatproblemstakingpartincommunitylifearecommonin

peoplewithschizophrenia.Givereasonswhypeoplewithschizophreniahavetheseproblems.

2. Discusswhatproblemstheindividualhas

Discusswhatproblemstheindividualhashadtakingpartincommunitylife

3. Identifytheactivitiestheindividualwantstodo

Findoutwhichcommunityactivitiestheindividualwouldliketodobutishavingdifficultywith

atthemoment.Youshouldreferbacktothelatestneedsassessment.

4. Identifybarriersandsuggestwaystoovercomethem

You should discuss with the individual and their caregiver why they think they are having

problemstakingpartinthesecommunityactivities.Lookatthesection26.2forsuggestions.The

mostappropriateapproachforhelpingindividualstotakepartincommunitylifewilldependon

thetypesofbarriers.Youshouldalsousetheproblemsolvingapproachtohelpyou(seeSection

10.5).Youcansuggestsomeorallofthefollowing:

a. Improvesocialskills

• Asktheindividualandfamilymembertothinkaboutwhatsocialskillstheyneedtodothe

communityactivitiestheywouldliketobeinvolvedin.Thesemightinclude:

o Greetingothers

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o Listeningtoothers

o Askingforinformation

o Expressinganopinion,forexampleabouttheirowntreatment.

o Sayingsorrywhenthisisneeded

o Eatingwithothersinapoliteway

Nowdiscusswith the individual and caregiverwhich things the individual hasproblemswith.

Focusonthesethings.

• Asktheindividualtopracticetheseskillswithyou.Forexample,

o Askthemtoshowyouhowtheywouldgreetaneighbourtheymetatchurch.

o Askthemtoshowyouhowtheywouldaskthepriceofsomethings,forexample

cabbageatthemarket

• Giveencouragement,includingsmilesandpraise,whentheindividualshowstheycandothe

skill

• Asktheindividualtotrytheskillsinareallifesituation

b. Inviteneighboursorrelativeforcoffee

Suggestthatthefamilyinviteneighboursorrelativestothehometodrinkcoffee.Thiscanbea

chancetopracticetalkingtofamiliarpeopleinafamiliarenvironment.

c. Familymemberaccompaniesthepersontocommunityactivities

Suggest thata familymembergoeswith the individual to thecommunityactivity for the first

few times. Thiswill give the individualmoremotivation and confidence. The familymember

maybeworriedthattheindividualwillbehaveinanembarrassingway.Suggestthattheystart

withactivitiesthatareclosetothehouseandinvolvefewerpeople.Forexampleitmaybeless

stressfultogotothegrainmilltogether,thantoattendafuneralwithmanyguests.

d. Engagewithcommunityleaders

Withthehelpoftheindividualandthecaregiver,identifykeypeoplewithinthecommunitywho

maybeabletohelptheindividualtogetbacktousualactivities.Consider:

o Religiousleaders,whomaybeabletohelpthepersongotochurch,mosqueora

religiousgroup(mahaberorlika)

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o Edirleaders,whomaybeabletohelpthepersoncontributetoEdirandparticipatein

theEdiractivities

o LeadersofYouthAssociation,Women’sAssociationorkebeleleaders,whomaybeable

tohelpthepersonattendmeetingsandcontributetokebeleaffairs

Ifyouhavenotalreadydoneso,itmaybeappropriateforyoutomeetwiththeleadertogive

theminformationaboutschizophreniaandtoseehowtheycanhelp.SeeTasks8,9and10in

CommunityEngagementChapter31.Alternativelythecaregivermaybewillingtoapproachthe

leaderindependently.

e. Useapproachesfromothermodules

Someoftheapproachesfromothermodulesmayalsocontributetowardshelpingindividualsto

takepartincommunitylife,forexample:

• Community-awarenessraising(seeChapter31),whichaimstoreducestigmaand

discriminationtowardspeoplewithschizophrenia

• Improvingadherenceandimprovingsideeffects(seeChapter20)

• Givingtheindividualstrategiestodealwithstigmatisingattitudes(seeChapter28)

• Improvingtheattitudeofthefamilytowardstheindividual(seeChapter25)

• Dealingwithdistressingsymptomssuchashallucinations,lackofmotivationandproblems

withorganisation(seeChapter22)

f. Actingasarolemodel

Thewayyoubehaveinthekebelecanhaveabigimpactonotherpeople’sattitudes.Whenyou

seetheindividualoutsidewhilstnotinahomevisit,greetthem,asyouwoulddoanyoneelse.

Showingthecommunitythattheindividualisjustlikeotherpeoplemaybeonewaytoreduce

stigma.

YoucanuseTable6asaguideforwhichapproachtouseinwhichcircumstances:

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Table6Approachestosupportindividualstotakepartincommunitylife

Problem ApproachLackofmotivation • Familymemberaccompanies

• Inviteneighboursorrelatives• Dealingwithdistressingsymptoms

Medicationsideeffects • AddresssideeffectsProblemswithholdingaconversation • Practicesocialskills

• InviteneighboursorrelativesThe family does not let the individualattendcommunityevents

• Improvingthefamilyenvironment• Inviteneighboursorrelatives

Stigmaanddiscriminationfromcommunity • Engagewithcommunityleaders• Actingasarolemodel• Dealingwithstigmaanddiscrimination• Communityawarenessraising

5. Makeaplan

Discusswith the individualwhich specific community activity to focus on first, and agree the

stepstostartparticipatingagain.Makesureeveryoneknowswhattheirroleis.

Followup

Make sure you followup progress on participating in community activities at the next home

visit.Discusswhatstrategiesweretriedandwhichoneshelped.Practicesocialskillsagainifyou

agreethismayhelp.Ifrelevant,makecontactwithcommunityleadertofacilitateengagement

incommunityactivities

Sara’sstory

Since she became unwell Sara has had problems visiting her sisters in the neighbouring

kebele.Thisissomethingsheusedtoenjoyalot.Oftenshedoesn’tgobecauseshedoesn’t

havetheenergy to leavethehouse.She isalsoworried that shedoesn’thaveanything to

say. Berhan discusses with Sara and Alemu, Sara’s husband, how they can change the

situation. Sara suggests that she could invite her sisters to visit her first of all as this will

requirelessenergy.Thenifthisgoeswell,Alemucantrytosupporthertovisitthem.Berhan

helpsSaratopracticehowtogreetpeopleandhowtostartaconversation.Theyallagreeto

tryandinvitethesisterswithinthenexttwoweeks,whichiswhenBerhanwillvisitagain.

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26.5 Summary

• Many people with schizophrenia have problems taking part in community life such as

attendingchurchorfunerals.

• Helping individuals take part in community life is good for improving self confidence,

reducingstigma,andreducingtheburdenonthefamily

• Waystohelpindividualstakepartincommunitylife:improvesocialskills,inviteneighbours

for coffee, family member accompanies, and engaging community leaders

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27 Module:Gettingbacktowork

27.1 Whatproblemsdopeoplewithschizophreniahavewithwork?

When we talk about work, it might mean different things depending on the individual and

whethertheyareamanorawoman.Workcaninclude:

• Farmworkonthefamilyfarm

• Dailylabouringonotherpeople’sfarms

• Householdworke.g.fetchingwood,fetchingwaterandpreparingfood

• Paidemploymentforexampleinashop

• Tradingatmarket

Manypeoplewith schizophrenia have problemswithwork. Theymay find they canwork for

shorterperiodsoronlyonsimpletasks.Someindividualsfinditdifficulttoworkatall.

27.2 Whydopeoplewithschizophreniahaveproblemswithwork?

• Theyareunwellandhavelotsofsymptoms

• Theillnessmakesitdifficulttoconcentrateandbeorganised.Forexample,handlingmoney

atmarketmaybecomedifficult.

• Medicationsideeffects,suchasdrowsinessandshakinghands,makeitdifficulttowork,

particularlyifitinvolvesphysicallabour

• Theillnessgivesthemproblemswithsocialskills

• Thefamilydoesnotlettheindividualdotheirusualworktasksastheyareconcernedthey

willdoitwrong

• Communitymembersmayhavestigmatisingattitudestowardspeoplewithschizophrenia.

Thismeansitmaybedifficulttogetpaidwork,forexampledailylabouring,withinthe

community.

• Theyarerestrainedathomesocannotwork.

• Inbetweenperiodsofbeingwellandabletowork,theindividualhasrelapses,duringwhich

timeitisnotpossible.Thiscanmaketheindividualseemunreliable.

• Whilsttheywereunwelltheymayhavelosttheirfarmlandorcattle.Thismaybebecause

theyhadtosellthemtogetmoneyformedicationorbecausetheywereunabletowork.Or

thelandorcattlemayhavebeengiventoanotherfamilymembertolookafter.

• Theillnessmakesthemunmotivated.

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27.3 Whyisitimportanttogetpeoplewithschizophreniabacktowork?

• Helpstoimprovetheeconomicstatusofthefamily

• Improvesself-esteemandconfidence

• Helpstostoptheindividualfromthinkingabouttheirsymptoms

• Reducesisolationandimprovessocialskills

• Ifthepersoncanworkalone,thismeansthecaregiverdoesnothavetostaywiththem,and

theycandotheirownusualactivities

• Improvesrelationshipwithfamily

27.4 Howcanwehelppeoplewithschizophreniatogetbacktowork?

Principles

• Focusontheareaswherethereareproblems

• Establishwhatisnormalfortheindividual

• Goslowlyandsteadily;theyshouldn’ttakeontoomuchworktoosoon.


theindividualtoworkwhenyouarenotthere.


2. Discusswhatproblemstheindividualhashadwithwork

Discusswhatproblemstheindividualhashadwithworkandwhytheyhavehadthem.

3. Identifytheworktheindividualwantstodo

Establishwhatwasworkwas normally done by the individual before they became unwell. If

theyusedtodoseveraltypesofwork,forexamplegoingtomarket,lookingafterthehousehold

anddoingfarmwork,discusswiththeindividualandfamilywhichtypeofworktostartwith.It

isusuallysensibletostartwiththesimplesttypeofwork.

4. Considerwhatpreparationisneeded

This will depend on the type of work and the wishes of the individual and family. If the

individual needs to engage with people outside the family during work, for example daily

labouring, theirneedsmaybedifferent. Itmightbenecessary toensure theyhavegoodself-

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care, improved social skills and the symptoms are under control. If the person plans only to

workonthefamilyfarm,itmightbelessimportanttoachievethesethingspriortodoingwork.

5. Tryspecifictasks

• Onceyouhavedecidedthetypeofwork,askthefamilytoselectonespecifictaskwithin

this.Forexample,ifthefocusisonfarmworkthefirsttaskselectedmightbelookingafter

thecattle.Askthefamilyandindividualtoselectataskthatis:

• Somethingtheindividualusedtodo,orisexpectedtodo

• Somethingwhichtheindividualfeelsreadytotry

• Withthefamily,breakdownthespecifictaskintoindividualsteps.Forexample,thesteps

involvedinlookingafterthecattleare:

• Untyingthecattle

• Takingthemtothefield

• Watchingthemwhilsttheygraze

• Asktheindividualtotrydoingthetaskwithafamilymemberpresent.Theyshoulddecidein

advancewhichoftheindividualstepsthefamilymemberwilldo,andwhichtheindividual

willdo.Theyshouldgraduallyworktowardstheindividualdoingallsteps.Evenifthe

individualmakesamistakethefamilyshouldgiveencouragementtocontinue.

• Discussthattheindividualwillprobablyonlybeabletoworkforshortperiodsatthe

beginning.Theymayneedtolotsofrestswhilstdoingwork.

• Oncetheindividualisabletodosomeofortheentirespecifictask,chooseanothertask

togetherandrepeatstepsatocagain.

6. Encourageindependentworking

As the individualbecomesmoreconfidentandable tocomplete thespecific tasks, the family

membersshouldencouragethemtoworkindependently.

7. ConsideraskingcommunitymembersoranNGOfortheirinput

In somecasesyoumayneed thehelpof community leadersandothercommunitymembers.

Any meetings with other community members should be done with the permission of the

individualandfamily.

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• Inyourinitialmeetingswithcommunityleadersyoushouldhavefoundoutthepotentialfor

daily labouringandotherpaidemploymentopportunitieswithin thekebele (seeTask7 in

CommunityEngagementChapter31).Ifyoufoundtherewereanyopportunities,youshould

nowdiscussthemwiththe individualandfamily.FollowTask15 inChapter31forhowto

followuptheseopportunities.

• If they lost their farmlandor cattlewhilstunwell, youmayalsoneed toaska community

leaderforinput.

• DiscusswithyoursupervisorifthereisalocalNGOwhocanoffersomelivelihoodsupportor

skilldevelopment.

8. Identifyingbarriers

You should discuss with the individual and their caregiver why they think they have had

problemsdoingtheworksofar,andwhatpotentialproblemsmightariseiftheytrytodothe

worknow.LookattheSection27.2forsomesuggestions.Youcanalsouseaproblemsolving

approach (see Section 10.5). Try to address these barriers alongside trying the specific tasks

(step 4). This will increase the chances of the person being able to work.

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Table7Approachestosupportindividualstogetbacktowork

Barrier ApproachUnwellandlotsofsymptoms • Module:Supportingindividualstotake

medicationLacksconfidence • Encouragementandsupportfromyou

andfamilyProblemswithmotivation • Module:Dealingwithdistressing

symptomsProblemswithorganisation • Module:Dealingwithdistressing

symptomsMedicationsideeffects • Module:Supportingindividualstotake

medicationProblemswithholdingaconversation • Practicesocialskills(Module:Takingpart

incommunitylife)The family does not let the individualwork

• Module:Improvingthefamilyenvironment

Stigma and discrimination fromcommunity

• Engagewithcommunityleaders• Module:Dealingwithstigmaand

discrimination• Communityawarenessraising• Actingasarolemodel

Relapse • Module:TakingcontrolofyourillnessFarm land has been taken by kebeleadministration

• Engagewithcommunityleaders

Farmlandhasbeentakenbyotherfamily • Identifywhohasdecision-makingpowerwithinfamilyanddiscusswiththemthebenefitsofindividualstartingtoworkonorlookafterownlandorcattleagain

• Module:Improvingthefamilyenvironment

Farmlandlostduetopoverty • Engagewithcommunityleaders• EngagewithNGO

9. Difficultsituations

Theindividualorfamilymayaskyouforfinancialhelp,foraloanorforajob.Ifthishappensyou

shouldexplainthatunfortunatelyyouarenotabletoprovideanyofthesethingstothemor

indeedtoanyofthepeopleyouareworkingwith.Tellyousupervisoriftheindividualorfamily

continuetoaskyouaboutthis,andconsiderdiscussingtogether.

10. Makeaplan

Makesureeveryoneknowswhatstepstheywilltakebeforethenexthomevisit.

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Followup

Onceyouhavestartedhelpingtheindividualtogetbacktoworkitisimportantthatyoufollow

thisupeverytimeyouseethem.

• Checkwhatprogresshasbeenmadewithspecifictasks.

• Checkwhatprogresshasbeenmadeoverall.Forexample,howmuchofthedaydoesthe

individualspenddoingfarmwork?Howdoesthiscomparetowhentheywereveryunwell?

Howdoesthiscomparetowhentheywerewell?

• Checkforanyproblems.Inparticularwhethertheworkistoostressfulortheindividualfeels

theyarenotbeinggivenenoughresponsibility.Trytochangetheplantofitbetterwiththe

individual’sneeds.

• Checktheprogresswithanylinksmadewithcommunitymembers

• Reviewanybarriersthatarestillpresentandtrytoaddressthemusingthesuggestions

above.

27.5 Summary

• Manypeoplewithschizophreniahaveproblemswithwork.Thismaybeduetotheillness,

medicationsideeffectsandstigma

• Gettingbacktowork is importantas ithelpsto improveconfidenceandsocialskills,bring

moneyintothefamilyandreducestigma

• Tohelptheindividualgetbacktowork:decidewhatpreparationisneededthentryspecific

tasksbrokendownintosteps.

• Consider working with community leaders to help find work within the community

Yosef’sstory

Yosefnolongerdoesanyfarmwork.Beforehebecameunwellhedidallthenecessarytasks.

Hesaysthereasonhedoesn’tdotheworkisbecauseheusuallyfeelstiredandunmotivated,

andtheworkseemsoverwhelming.YosefandhisfamilyagreeYosefisreadytostarttrying

toworkagainashissymptomsarequitewellcontrolled.Theyagreehewillstartbyhelping

hisfathertothreshthewheat.Beforehestartstheydiscussthespecificstepsinvolved,and

agreethatYosefshouldonlyworkforashorttimeinitially,beforehavingarest.

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28 Module:Dealingwithstigmaanddiscrimination

28.1 Whatproblemsdopeoplewithschizophreniahavewithstigmaanddiscrimination?

InChapter6you learntabout theproblems thatpeoplewith schizophreniahavewith stigma

anddiscrimination.

28.2 Whydopeoplewithschizophreniahaveproblemswithstigmaanddiscrimination?

Stigma can be found in familymembers, communitymembers and healthworkers. A person

mayalsostarttobelievethestigmatisingthingsthatpeoplesay–thatiscalledself-stigma.

28.3 Whyisitimportanttoreduceexperiencesofstigmaanddiscrimination?

Stigma and discrimination can mean that individuals find it more difficult to return to the

activitiesthattheyusedtodowhentheywerewell.Peoplewithschizophreniamaycontinueto

bediscriminatedagainsteventhoughtheyhaverecovered.Itcanbeupsettingtofeelseparate

anddifferentfromfamily,neighboursandcommunity.Peoplewithschizophreniaoftenfeelthat

stigma and discrimination is even more distressing than the symptoms of the illness. It is

therefore important to reduce stigma and discrimination. Individuals may get back to usual

activitiesfasteriftheseproblemsareaddressed.

28.4 Howcanwereduceexperiencesofstigmaanddiscrimination?

1. Explainwhatstigmaanddiscriminationis

Explainwhatyoumeanbystigmaanddiscrimination


Explainwhyitisimportanttoreduceexperiencesofstigmaanddiscrimination.

3. Discussexperiencesofnegativecommentsanddiscrimination

Firstofall,discusswhatexperiencesofstigmaanddiscriminationtheindividualhashad.Discuss

whathappenedandhowitmadethemfeelaboutthemselves.Iftheindividualhastrouble

thinkingofanyexperiences,youcanyouuseSection6.2topromptthem.Rememberthismight

beupsettingfortheindividualandfamily.

4. Encouragetheindividualtothinkaboutthemselvesinapositiveway

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Discusswiththeindividualthatevenifwecannotcontrolthewayotherpeopleseethem,they

should still see themselves as a valuableperson. Tell the individual that the illness is not the

onlyimportantthingaboutthem,andthattheycanrecoverandhaveameaningfullife.

5. Discusshowtodealwithnegativecommentsanddiscrimination

a. Discusshowtheindividualdealtwiththesituationatthetime.Forexample,whattheydid

whensomeonecalledthemaninsultingname.Discusswhetherthewaytheyresponded

wasusefulornot.

b. Discussotherwaystheindividualcouldrespond.Forexample,itmaybeusefultopractice

explainingtheillnesstoothers.Youcouldsuggestthattheindividualtriessaying,“Ihavean

illnesslikeotherillnesses.Iamtakingthemedication,whichmakesmebetter“or“This

illnesscouldhavehappenedtoanyone.”

6. Discusswhichwaysofrespondingwouldnotbeuseful.

Forexample,gettingintoafight.

7. Discussthecaregiver’sexperiencesstigmaanddiscrimination.

Youcanrepeatthesestepswiththecaregiver.

8. Discusswhatotherapproachesmayreducestigma

TherearemanypartsofCBRthathelptoreducestigmaanddiscrimination.Theseinclude:

a. Giveinformationaboutschizophreniatothepersonwithschizophreniaandtheirfamily(see

Chapter16).Inparticular,focusonthepossibilityofpositiveoutcomes.

b. Awareness-raisingamongstcommunitymembersandcommunityleaders(seeChapter31).

Oncepeoplehavemoreinformationtheyarelesslikelytohavenegativeattitudestowards

peoplewithschizophrenia.

c. Supportingindividualstoimproveself-care,togetbacktotheirusualactivitieswithinthe

communityandtogetbacktofarmworkoremployment(seeChapter26and27).When

peopleinthecommunityseetheindividualdoingusualactivitiesagain,thiswillhelpto

reducetheirignoranceandprejudicetowardspeoplewithschizophrenia.

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d. Supportingaccesstotreatmentandsupporttakingmedicationswillhopefullyimprove

symptoms(seeChapters17and20).Thismakesitmorelikelythefamilyandcommunitywill

treattheindividualasnormal,andalsoshowspeoplethatschizophreniaistreatable.

e. Iftheindividualortheirfamilyisworriedthathomevisitsbyyoumaybringnegative

attentiontothehousehold,suggestyouholdthesessionselsewhere,forexampleatthe

healthpost.

f. SetupaFamilySupportGroupsothatthepersonandtheirfamilycansharetheir

experiences,includingwaystodealwithstigma.Thegroupscanalsobeawaytoimprove

self-esteem(seeChapter32).

g. Encouragethefamilytoaccepttheperson’sillnessandtreattheindividualinadignifiedway

(seeChapters19and25)

h. Treattheindividualwithrespectanddignityyourself(seeChapter11).

9. Makeaplan

Agreewhatactionstheindividualandfamilywilltakebeforethenextsession

Followup

Atthenextsessioncheckiftherehavebeenanynewexperiencesofstigmaordiscrimination

andifsohowtheindividualdealtwithit.Askwhetherthestrategieswereuseful.Discusshowto

changethestrategyfornexttimeithappens.

Sara’sstory

Sometimes children in the kebele shout at Sara that she is mad. They laugh at her and

sometimes throw stones. Sara finds this very upsetting and itmakes her want to stay at

homeallthetime.Whenithappensusuallysheignoresthechildren,whichisquitehelpful.

However,shetellsBerhanthatshewouldfeelmoreconfidenttogooutsideifshehadsome

wayofresponding.SaraandBerhanpracticehelpfulthingsthatSaracansayinacalmway

tothechildrennexttime.Theyagreethatitisnothelpfultothrowstonesback.Alemuagrees

thatitisalsonothelpfulwhenhecallsSaranames.SaraandAlemuagreetotrytheseideas

before they next see Berhan in one month’s time. Berhan tells Sara that she is doing

awareness-raising in the kebele, which hopefully will improve the attitudes of community

members,includingthechildren.

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28.5 Summary

• Stigmaanddiscriminationisacommonexperienceforpeoplewithschizophrenia

• Itisimportanttoreducestigmabecauseitisabarriertoreturningtousualactivities

• Ways to reduce stigma include: helping the family and community to understand

schizophreniabetter,supporting individualstogetbacktousualactivitiesandgivingthem

strategiestodealwithnegativecomments

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29 Module:Improvingliteracy

29.1 Whatproblemsdopeoplewithschizophreniahavewithliteracy?

Likemanypeople in rural Ethiopia,oftenpeoplewith schizophreniaarenotable to readand

write.Thisismorecommoninwomen.

29.2 Whydopeoplewithschizophreniahaveproblemswithliteracy?

Peoplewithschizophreniamayhavemoreproblemswithliteracythanotherpeopleiftheyhad

toleaveschoolearlyduetotheillness.Peoplewithschizophreniamayalsofinditmoredifficult

toaccesstheadultliteracytrainingthatisavailableineverykebele.Thismaybebecauseof:

• Beingtoounwelltotakepart

• Havingproblemswithmotivationorproblemsthinkingclearly

• Stigmaanddiscriminationmeaningpeoplewithschizophreniaareexcludedsimplybecause

oftheirillness.

29.3 Whyisitimportanttoimproveliteracy?

Improvingliteracyinpeoplewithschizophreniamayhavethefollowingbenefits:

• Improveself-esteemandconfidence

• Providesameaningfulactivity,whichmaydistractfromsymptomsandsideeffects

• Helpstogetbacktousualactivitiesforwhichithelpstoreadandwrite,forexample

participatinginkebeleorediractivities,orconductingbusiness

29.4 Howcanwehelptoimproveliteracyinpeoplewithschizophrenia?

Principles

It isnotyour role to teach the individual to readandwrite. Insteadyoushouldhelp themto

accessexisting facilitiesusing the following steps.Beforeyouundertake thismodule, confirm

thatthereisadultliteracytrainingoraschool(iftheindividualisschoolage)inthekebelethat

isacceptingstudents.Discusswiththeco-ordinatororheadteacherwhetherthereisanyreason

whyaneligiblepersonwith schizophreniacouldnotattend, if theywished to.SeeTask15 in

CommunityEngagementchapter.Ifthereisafacilityavailable,continuethefollowingsteps.


Explainwhyitmaybeimportantforsomepeoplewithschizophreniatoimproveliteracy

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2. Findoutthelevelofliteracyoftheindividual

• Howmanyyearsdidtheygotoschoolfor?

• Howlongagoweretheyatschool?

• Cantheywritetheirname?

• Cantheyreadshopsigns?

3. Confirmtheindividualisinterested

Confirmthattheyareinterestedinlearningtoreadandwrite.

4. Arrangeattendanceatfacility

Asktheindividualandfamilymembertoapproachtheliteracygrouporschooltoarrange

attendance.Iftheindividualandfamilyarenotwillingorabletomaketheinitiallink,arrangea

meetingwiththeco-ordinatororheadteacheryourself.Discussthepotentialbenefitsforthe

group/schoolandfortheindividual.

5. Helptheindividualtoattend

Facilitatetheindividualtoattendthegroup/schoolifthishasbeenarranged.Forexample,

discusswiththefamilywhowilltakethemtothefacility.Itmaybepossibleforafamilymember

tositinthegroupinitially.

Followup

Followupprogresseachtimeyouseetheindividual.Askthefollowingquestions:

• Hastheindividualattendedthegroup/school?

• Werethereanyproblems?Ifsotrytouseaproblemsolvingapproachtoaddressthem.

• Istheindividualnoticinganybenefits?

29.5 Summary

• ManypeopleinruralEthiopiaareunabletoreadandwrite,butthismaybemorecommon

inpeoplewithschizophrenia

• Learning to read and write may help with confidence, and getting back to work or

communityactivities

• You should not teach the individual to read and write but you can help them to access

existing services

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30 Module:Takingcontrolofyourhealth

30.1 Whatproblemsdopeoplewithschizophreniahavewithrelapse?

Most people with schizophrenia have an ‘up and down’ course of the illness. This means

sometimes they feel well and have no symptoms, while at other times they experience a

return of symptoms.When symptoms return in away that is problematic and distressing,

thisisknownasarelapse.

30.2 Whydopeoplewithschizophreniahaverelapses?

Different people experience relapses due to particular reasons and the time between

relapses also varies a lots. Most often relapses develop gradually over a period of a few

weeks. But some people experience a relapse very quickly, in a matter of days. Not taking

medicationmakesitmorelikelythatarelapsewillhappen.Somestressfulsituationscantrigger

arelapse,including:

• Illnessordeath in thefamily

• Change indailyroutineor livingarrangement

• Argumentorrelationshipproblemwithfamilymemberorneighbour

• Newresponsibilities,forexampleduetofamily illnessorrelativesvisiting

• Physicalillness

• Khatoralcoholuse

Whataretheearlywarningsignsofrelapse?

Duringthetimebefore the relapse, there are changes inthepersonwithschizophreniathat

are called ‘early warning signs’. Thesewarning signs are often unique to each person.The

personwithschizophreniaandfamily memberscanoften identify themsince theyhaveseen

this happen a few times. These early signs of a relapse are important to recognize and

respond to, since this can be a timewhen something can be done to stop the person from

sufferingtheseriousconsequencesofa relapse.Themostcommonearlywarningsignsare:

• Tensionandnervousness

Individualsmay report feeling anxious,nervousor tenseabout small things that theywould

not usual ly worry about. People feel worried,walk around the house excessively, and are

unabletorestbysitting inoneplace for long.

• Sleepdisturbances

Manypeople with schizophrenia experience changes in their sleeping habits. They either

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have difficulty insleepingor startsleepingmorethannormal.

• Feelingsadandangry

Individualsmay feel sad all the time. This can lead the person feeling hopeless and having

suicidal ideas. Family member may notice that the person is talking less, hardly smiles,

looks worriedandisoftentearful.

• Becomingisolatedfromothers

Manypeoplewillbecomewithdrawnandlessinterestedintalkingtopeople. This isoften

noticed firstby familymembers as theperson becomesquieter, doesnotmeetguests,and

avoids going out of the house. There can bemany reasons for the social isolation. Some

people feel tense and anxious if they have to talk to someone, while others can start

feeling suspicious of people and decide the best way to deal with it is by reducing social

interactions.

• Difficulty inconcentration:

Individualsmay find itmore difficult to concentrate and pay attention to something for a

period of time. This leads to difficulty in following a conversation, cooking a meal, or

rememberingtogetthingsfromashop.

• Reducingorstoppingmedicines

Sometimes the personwith schizophrenia does not realize that they are going to have a

relapse.Becauseofthistheymaydecidetoreduceorstopthemedication.Theymayalso

refusetogotothehealthcentreorrefusetoseeyou.

• Changeinappetite

Beforearelapsepeopleoftenchangetheireatinghabits.Usuallythereisalossofappetite.

This can sometimes lead toa loss ofweightand to ageneral senseof tirednessand lackof

energy.Lesscommonly,peoplemaystartwantingalotoffoodseveraltimes aday.

• Uniquesignsofrelapse

Quite often, family memberswill be able to describe particular signs of a relapse that are

uniquetotheindividual and tend tooccuronly in suchsituations.

30.3 Whyisitimportanttopreventrelapse?

During a relapse, most people are too unwell to do farm work, housework or other usual

activities.Evenafterthesymptomsstop,itcantakeafewweeksormonthsfortheperson to

return to the previous level of functioning. Some people may even feel that they want to

commitsuicideduringthis timeduetoconstantlyhearingvoicetellingthemnegativethingsor

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becausetheyhavedevelopeddepression.Others canbecome very suspicious and frightened.

This is also the timewhen some people become irritated andeasily angry; rarely, there can

beariskofharmfromthe persontoothersinthefamilyorcommunity.Thefamilymayfeel

they have no choice but to tie up the person with schizophrenia. After a relapse the

individualmayalsohaveasenseof failure (‘Thishappened inspite oftryingsohardtostay

well’). Theymayalso feelmorestigmaanddiscrimination from their family, neighbours and

community. Having a serious relapse is a setback for everyone and preventing this from

happening isoneofthemostimportantgoalsofCBR.

30.4 Howcanwepreventrelapse?

Principles

Relapse prevention involves helping the person with schizophrenia and the family to

recognizetheearlysignsofarelapseandputting inplaceaplantodealwith the situation.It

is a jointeffort involvingyou, thepersonwith schizophrenia and the family.Thefocusshould

beonhelpingtheindividualtotakecontroloftheirownhealth. Theaimsofrelapseprevention

are:

• Topreventa relapsefromhappening.Unfortunatelythisisnotalwayspossible.

• Tominimizetheseverityoftherelapsesothatthetimetorecoveryisshortened.

Topreventrelapseweshoulddotwomainthings:

• Firstly,weshouldsupportindividualstotakemedication.

• Secondly,weshouldtryandreducelifestressbyhelpingindividualstocopebetterwith

theirproblems.

Before undertaking thismodule, decidewho to involve. The personwith schizophrenia must

alwaysbeinvolved,aswellastheprimarycaregiverandanyotherkeyfamilymemberswho

the person trusts and is comfortable with.Thegroupshouldbebetween3and5peopleand

will usually involve parents, spouses and in some cases adult children or more distant

relatives.Gatherthegrouptogethertocarryoutthefollowingsteps:


Give information about what relapse is, what problems it causes and why it is important to

preventit.

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2. Discusstheproblemsofrelapse

Discusswhat happened during themost recent relapse, for examplewhich symptomswere

mostprominentandwhatusualtasksthepersoncouldnolongerdo.Allmembersofthegroup

shouldbeencouragedtojointhediscussion.

3. Discusstheearlywarningsigns

Explainwhatearlywarningsignsareandaskthegroupwhethertheyusuallynoticeany. Use

theEarlyWarningsignsChecklist(Form17)tomakesureyouhaven’tmissedany.Agreeon3to

5importantsignsfortheindividual.

4. Discussstressfultriggers

Explainthatrelapsecanbecausedbycertainstressfulsituations.Askthegroupwhetherthey

can remember anywhich came before the person’s relapse. Explain that it is useful to think

aboutthesesotheycanbeavoidedinthefuture,wherepossible.

5. Discusstherelapsemanagementplan

Explainthatthepurposeoftheplanistodecideinadvancehowyouwillallrespondtoearly

warning signs.Having aplanmayhelpus toprevent a serious relapse, or help it to resolve

quicker.Theplanshouldbemadejointlywiththegroupmembers.Inparticularthewishesof

the personwith schizophrenia should be sought and included in the plan. They should feel

theyhavesomecontroloverwhathappenstothemduringtherelapse.Recordtheplanonthe

RelapseManagementForm(Form18).Eachmembershouldbeclearonwhattheirrole is. If

appropriate,giveacopyoftheplantoeachmemberofthegroup.Thedetailedpartsofthe

planwill be different for each individual.However formost families the following elements

shouldbeincluded.

a. Familymeeting

Ifearlywarningsignsarenoticedbythepersonwithschizophreniaorfamilymembers,afamily

meeting should be held. Concerns should be discussedopenly and aplan isagreedon. This

process should help everyone, including the person with schizophrenia, to participate as

equals in trying to improve the situation. This process also helps the person with

schizophrenia and family take on responsibility for managing the illness and improve their

senseofcontrol.

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b. Reviewwhethertheindividualistakingmedicationregularly

Not takingmedication is often an important factor in a relapse. Find out the person’s

reasons forstoppingthemedicine.Takethestepsintheadherencesupportchaptertoensure

theindividualstartsthemedicationagainassoonaspossible.

c. Clinical review

Arrange for a review at the health centre as soon as possible. Inform the person with

schizophrenia and familywhen the appointment is. Check if there are anymajor barriers to

attendingthehealthcentreandtrytoresolvethem.Ifyoufeel theyareunlikelytoattend,you

might need to accompany the person to the health centre. After the review, check if

everyonehasunderstoodtheadvice f romthe nurse .

d. Reducestress

Identify anyobviousstressful situation thattheperson has experienced recently.Ifpossible

try to removeor reduce thestress.Suggest stress management activities,particularly those

thathavebeenusefulinthepast(seeChapter23).

e. Reducealcoholorkhat

Usingalcoholorkhatmaymaketherelapseworse.Youandthefamilyshouldhelptheperson

toreduceorstopusingalcoholorkhat.Forexample,byremovinganybottlesfromthehouse,

providing lessmoney to buy it and by reinforcing any steps taken by him to reduce alcohol

use.

f. Activatesocialandpracticalsupport

Identify relatives, friends and community leaders who may be able to provide social and

practical support. In particular, the caregivermay needmore support during a relapse. For

example,neighboursmaybeabletohelpwiththefarmworkwhilstthepersonisunwell.

g. Monitorthesituation

Yourroleistocloselymonitorthesituation.Ateachvisitcheckwhethertheearlywarningsigns

haveimproved.

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6. Maketheplan

Ensureeachmemberisclearonwhathisorherroleintheplanis.

Followup

It is a good idea to review the plan every 6 months, to ensure that everyone involved

rememberstheissuesclearlyand anyupdatescanbemade.

30.5 Summary

• Whensymptomsreturn inawaythat isproblematicanddistressing, this isknownasa

relapse.Relapsesareacommonpartoftheillness

• Relapsesmaybetriggeredbystressfulevents

• Youshouldhelpthefamilytodeveloprecognisetheearlywarningsignsandknowthelikely

stressfultriggers

• Youshouldhelpthefamilytomakearelapsepreventionplanwhichusuallyincludes:family

meeting, check medication, review at the health centre and reduce stress

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31 Communityengagement

31.1 Whyisitimportanttodocommunityengagementwork?

Thecommunitycanhaveapowerfulimpact-bothpositiveandnegative-ontheexperiencesof

thepersonwithschizophrenia.CBRaimstoincreasethepositiveinfluencesofthecommunity,

andreducethenegativeinfluences.Therearemanycommunityresourcesineverykebele(see

Chapter8). It isyour role toensure that thepersoncando thesamecommunityactivitiesas

otherpeopleoftheirageandgender.Thecommunityalsohasanimportantroleinmakingsure

thepositivechangesmadeduringCBRarecontinuedafteryouhaveleft.

31.2 Whatcommunityengagementworkdowedo?

PhaseI

DuringPhase I you shoulddo the following tasks ineachkebelewhereyouareworking. You

shoulddothesetasksatthesametimeasyouaredoingthehomevisitstoeachindividualyou

workwith.Youdon’tneedtodo these tasks in theordersetoutbelow; lotsof the taskswill

overlap. Rememberwhen you talk to community leaders or other communitymembers you

shouldnotrevealthenameorproblemsoftheindividualyouarecaringfor,unlessyouhavegot

theirpermissiontodoso.

Task1:Meetwithhealthextensionworker/s(HEW)

How?

• GettheHEWcontactdetailsfromthehealthcentreandarrangeameeting.Youmayneedto

spendbetween2hoursandawholedaywiththeHEW.

• CheckwhethertheHEWisawareofthepeoplewithschizophreniatowhomyouhavebeen

allocated.Iftheyare,askiftheyarewillingtoshowyouwheretheylive.Askwhatthey

knowaboutthemandwhatproblemstheyareawareof.

• Askthemwhotheimportantcommunityleadersare(seeTask2)andiftheHEWwouldbe

willingtomakeinitialintroductions

• Askwhattheimportantcommunityresourcesare(seeTask3)

• Explainwhatyourrolewillbeintermsofhomevisitsandcommunityengagement

• Explainhowyouwouldlikethemtobeinvolved:supportthemessagesyouwillgiveabout

reducingstigmaanddiscriminationandtheimportanceofaccessingtreatment;dotheir

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usualhomevisitandofferthecaretheyusuallyprovidetopeoplewithschizophreniae.g.

familyplanning.

• Giveyourcontactdetailsincasetheyhaveanyquestions

Task 2: Identify important community leaders e.g. kebele leader/s, Edir leaders, religious

leaders,traditionalhealers,women’sassociationleader.

How?

• FirstasktheHEWtohelpyou.Iftheydonothavetheinformationuse:HealthCentreof

DistrictHealthBureau(DHB)records;church/mosque;othercommunityleaders

• Getthenames/address/telephonenumber

Task3:Identifykeycommunityresourcese.g.churches/mosque,Edir,adultliteracygroup,

schools,Mahaber/tsewa/likagroups,informalsocialnetworks,women/youthassociations,

NGOs

How?

• AsktheHEWs,kebeleleaderandcommunityleaders

• Iftheydonothavetheinformationuse:HealthCentreorDHBrecordsandchurch/mosque

Task4:Ascertainwhatcommunityworkrelatingtomentalillnesshasalreadytakenplaceoris

plannede.g.communityconversations,engagement/trainingoftraditionalheaders

How?

• AsktheHEWs

• This will help you to plan meetings with community leaders (Task 7) and community

awarenessraising(Task6)

Task5:Meetingswithimportantcommunityleaders

How?

• AsktheHEWstointroduceyoutocommunityleadersifpossible

• Meetwithandintroduceyourselfto5-10importantcommunityleadersfromacrossall

sectors.

• Trytospeaktothesecommunityleadersatameetingoreventthatisalreadyplanned,for

exampleakebelemeeting.Thiswillmakeiteasiertoreachthem.Ifthatisnotpossible,

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invitethesecommunityleaderstoameeting,eitherinonegrouporsmallgroupsdepending

onthelocalcircumstances.Discusswithyoursupervisor.

• Themeetingmaytakeupto2hours,butcouldbemuchless.

• Atthemeeting,coverthefollowing:

o PurposeofCBRprogramme(brieflydescribeseverementalillness;thepossiblyof

recovering;importanceofmedication;theneedforhelpwithrehabilitationtoo;get

moreproductivecommunitymemberattheend,benefitswholecommunity),

o AuthorisationgiventoCBRprogramme(linkstodistricthealthbureauandAddisAbaba

University)

o GiveoutlineofCBRactivities,includinghomevisitsandtypesofmodules

o Giveoutlineofcommunityengagementactivities(communityawarenessraisingevents,

furtherindividualmeetingswithcommunityleadersaccordingtoneedsofindividuals)

o Giveoutlineofhowyouwantthecommunityleaderstobeinvolved(helparrange

communityawareness-raisingevents;generalsupporte.g.encouragingindividualto

keepusingmedication;encourageinclusioninEdirtasksforthepersonwith

schizophrenia;encouraginginclusioninkebelemeetings;makingsurepeoplearenot

excludedfromchurch)

o Giveoutlineofhowyouwantgeneralcommunitymemberstobeinvolved(general

support;encouragegeneralsocialinclusion)

o Askwhatisthebestplaceforacommunityawareness-raisingevent

o Askaboutcommunityresources(SeeTask3)

o Gatherinformationonpotentialpaidemploymentinthekebelee.g.farmlabouring(see

Task7)

o Arrangeasubsequentmeetingifthecommunityleader/swouldlikemoretimeto

discuss

Task6:Communityawareness-raisingevent/s

How?

• Youshouldholdtheeventatacommunitymeetingthatisalreadyplanned.Utilisetheplace

suggestedbythecommunityleaderse.g.kebeleorEdirmeeting

• Pre-arrangethedate,starttimeandtheamountoftimeyouhavetospeak.Themeeting

maytake30minutesto2hoursdependingonwhereitisheldandthetopicsyoucover

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• Youmaywishtoarrange2or3meetingstogiveyoutimetocoverallthetopics.Thisisa

suggestionforhowtodivideupthetopics.

• Meeting1topics

o Introduceyourselfandexplainthatyouareworkinginthekebeletotryandsupport

peoplewithschizophrenia

o Describehowschizophreniaisaminddiseasethatcanimprovewithmedication

o Peopledevelopschizophreniaduetostressfuleventsthathappeninlife.

• Meeting2topics

o Explainthatwithtimeandsupportpeoplewithschizophreniacangetbacktousual

activities,suchasworkandsocialising

o Peoplewithschizophreniacangetmedicationatthehealthcentre.Thiswillmake

thembetter.

• Meeting3topics

o Togetbetterpeoplewithschizophrenianeedthesupportofpeopleinthecommunity

o Itisimportantnottotreatpeoplewithschizophreniadifferently,forexamplewith

disrespect,callingthemnames,orignoringthemjustbecausetheyhavethisillness.

o Thiskindofbehaviourwillstopthemfromgettingbacktotheirusualactivities

o Itisalsoimportantnottobeatpeoplewithschizophrenia.Thiswillnothelpthemget

better.

o Gettingmedicationwillreducetheneedforindividualstobechained.Weshouldavoid

chainingifpossible,andinsteadhelppeoplewithschizophreniagettreatment.

• Explaintheinformationsimplyandclearly

• Listencarefullytotheresponsesfromthoseattending.Berespectfulofanydifferencesin

beliefsordifferingopinions.

• Thankattendeesfortheirtime.

Task7:Identifypotentialemploymentopportunitiesinthekebele

How?

• Identifypotentialpaidemploymentopportunitiese.g.farmlabouringbyconsulting:

communityleaders,thepersonwithschizophreniaandHEWs.Thismaybeonaone-offor

ongoingbasis.

• Arrangeameetingwiththepotentialemployer

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• Discusspotentialbenefitsfortheemployer,community,individualandcaregiverofoffering

paidemployment

• Addressanyconcernsthepotentialemployerhas

PhasesIIandIII

InPhasesIIandIIIyoumayormaynotneedtoconductthefollowingactivitiesdependingon:

• Needsofindividualandcaregivers.ItisindicatedinthemoduleswhenaCommunity

Engagementtaskislikelytobeuseful.

• Availablecommunityresources,whichyouidentifiedinTask3.

• Whatthepersonortheirfamilyiswillingorabletodothemselves(thereforenotrequiring

yourinput).

• Whotheindividualandfamilyarehappyforyoutotalktointhecommunity

• Youshouldalwaysdiscusswithyoursupervisorwhichonestoundertake.

Task8:IndividualmeetingswithKebeleleaders

Inwhatcircumstances?

• IftheindividualisnotreceivingfreemedicationbutmaybeeligibleAND/OR

• Iftheindividualand/orcaregiverisnotengagedinkebeleactivitiesbutwouldliketobe,and

familyhavebeenunsuccessfulingettinginvolvedwithoutyourhelp

How?

• ArrangemeetingwithKebeleleader

• DiscussthepossibilityoflettersupportingfreemedicationAND/OR

• Discussthefactthattheindividualorcaregiverfindsitdifficulttoparticipateinkebele

activities

• Discussthebenefitsofthemparticipatinge.g.contributetodevelopmentofkebele

• Discusshowtofacilitatetheirincreasedparticipation

Task9:IndividualmeetingswithEdirleaders


• IftheindividualorcaregiverisnotengagedinEdiractivitiesbutwouldliketobe,andfamily

havebeenunsuccessfulingettinginvolvedwithoutyourhelpAND/OR

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• Thehealthextensionworkerorcommunity leaderssuggest that theEdirgroupcouldgive

financialorpracticalsupporttotheindividualandfamily

How?

• ArrangemeetingwithEdirleader

• DiscussthefactthattheindividualorcaregiverfindsitdifficulttoparticipateinEdir

activities

• Discussthebenefitsofthemparticipatinge.gcontributetoEdirwork,reduceworkof

others.

• DiscusshowtohelpthemparticipatemoreAND/OR

• Discuss that in a crisis situation the individualmay come to Edir for financial or practical

support

Task10:Individualmeetingswithreligiousleader


• Theindividual,caregiverorHEWidentifiesreligiousleaderasimportantsourceofsupport

AND/OR

• Theindividualhashaddifficultiesattendingchurchorreligiousgroups,andfamilyhavebeen

unsuccessfulingettinginvolvedwithoutyourhelpAND/OR

• Theindividual,caregiverorHEWidentifiespriestascurrentlygivingincorrectorconflicting

messagesabouttreatment,includingmedication

How?

• Arrangemeetingwithreligiousleader

• Discusshowthereligiousleadercansupporttheindividualandcaregivere.g.reinforce

importanceofaccessingcare,notchainingunlessabsolutelynecessaryAND/OR

• Giveinformationabouttheimportanceoftakingmedicationforrecovery.Berespectfuland

donotdisagreewiththeirbeliefsAND/OR

• Discussthefactthattheindividualorcaregiverfindsitdifficulttoparticipatein

church/mosque/religiousgroups

• Discussthebenefitsofthemparticipating

• Discussnextstepsforinvolvingthem,ifpossiblee.g.priestiswelcomingtoindividual;priest

makesadaptationsorspecialarrangementstoencourageindividualtoattend.

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Task11Individualmeetingswithtraditionalhealer/holywaterattendant


The individual, caregiver or HEW identifies traditional healer or holy water attendant as

importantsourceofreinforcementorcurrentlygivesincorrectmessagesabouttreatment

How?

• Arrangemeetingwithtraditionalhealerorholywaterpriestorattendant

• Discusshowthetraditionalhealerorholywaterattendantcansupporttheindividualand

caregivere.g.reinforceimportanceoftakingmedicationwhilstatholywater

• Berespectfulanddonotdisagreewiththeirbeliefs

Task12Individualmeetingswithliteracygroupleaderorheadteacher


If the individualorcaregiver isnotengaged in literacygrouporschool(and isschoolage)but

wouldliketobe,andfamilyhavebeenunsuccessfulinarrangingthiswithoutyourhelp.

How?

• Arrangemeetingwithliteracygroupleader

• Discussthefactthattheindividualorcaregiverwouldliketoparticipateintheliteracygroup

• Discussthebenefitsofthemparticipating

• Discussnextstepsforinvolvingthem,ifpossible

Task13Demonstrateprogressofindividualstocommunityleaders/widercommunity


• Personwithschizophreniawhoisrecoveredandhasgoodfunctioningisavailableandwilling

tospeaktogeneralcommunityAND

• ThereisasuitableplaceinacommunitysettingwherethisindividualcanspeakAND

• You and your supervisor assess that the community has a good level of awareness and

speakingtocommunitymembersisunlikelytobringadditionalstigmaanddiscriminationto

theindividual.

How?

• Workwithsupervisortoidentifypersonwithschizophreniawhoissuitableforthistask,

eitherthroughRISEortheButajirastudy

• Discussexpectationswiththeindividuale.g.anyfearsaboutstigma

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• Takeconsentfromtheindividual

• Arrangewithcommunityleaderforindividualtospeakatpublicmeetinge.g.FamilySupport

Groupmeeting,kebelemeeting,Edirmeeting.

• Ensuretheindividualreceivescompensationfortheirtime,transportetc.Discusswithyour

supervisor

Task14Communityawarenessraisingconsolidation


Communityleadersarewillingtoreceivefurthercommunityawarenessraisingactivities

How?

RepeatTask6inthesameordifferentcommunitymeetings

Task15Facilitateemploymentopportunitiesinthekebele

• Arrangejointmeetingwiththeindividual,caregiverandemployerpreviouslyidentifiedas

abletoofferemployment

• Iftheemploymentgoesahead,keepinregularcontactwiththeemployertodiscuss

progressandconcerns.

31.3 Howdowedealwithdifficultsituations?

Whenmeetingwithcommunityandreligious leadersyoumayfindtheyhavedifferentbeliefs

aboutschizophrenia,forexamplethatit iscausedbyspiritpossessionorevileye,orthatholy

waterwillnotworkiftheindividualtakesmedication.Youshouldnottellthemtheirbeliefsare

wrong. You may find it useful to say there may be many different reasons why someone

becomesunwellwithschizophrenia,andoftenwedon’tknowthecause.Alsorememberthat

you are not suggesting that people should stop going to holy water, unless they are being

harmedthere.Youshouldbeworkingtowardstheindividualusingmedicationandholywaterat

thesametime.

Occasionally,community leadersmaynotbe interestedtomeetwithyou. If thishappensyou

shouldworkonbuildingyourrelationshipgradually,insteadofinsistingthattheyworkwithyou.

You could try asking others for help building the relationship, such as the HEW, or another

community leader who is more interested in CBR. If you are having lots of problems with

community engagementwork you should discuss this with your supervisor andmake a plan

togetherforhowtoimprovethesituation.

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31.4 Howdowedocumentthecommunityengagementwork?

ForeachkebeleyouareworkinginyouwillhaveaseparateKebeleLogbook(seeForm10).In

theLogbookyouwillrecordinformationallthecommunityengagementworkyouundertake.

31.5 Howdowemonitortheprogressofthecommunityengagementwork?

You will discuss at the community engagement work in each kebele at your Face-to-Face

Discussionswithyoursupervisor,andalsoattheGroupSupervisionsessions.

31.6 Summary

• Itisimportanttodocommunityengagementworktotrytoincreasethepositiveinfluences

ofthecommunityontheindividual,andtoreducethenegativeinfluences.

• InPhaseIyoushould:meetwiththehealthextensionworker,identifyimportantcommunity

leaders and resources, find out what mental health awareness raising has already taken

place,meetwiththecommunityleaders,doacommunityawareness-raisingevent,andfind

outaboutpotentialemploymentopportunities.

• InPhases IIand IIIyoumayormaynotneedtodothe followingsteps,dependingonthe

needs of the individual: individualmeetingswith the kebele leader, religious leader, Edir

leader, Traditional healer andholywaterpriestor literacy group leader; demonstrate the

progressofindividualstothecommunity;andfacilitateemploymentopportunities

• YoushoulddocumentthecommunityengagementworkintheKebeleLogbook

• Your supervisor will monitor the progress of community engagement work at your

supervisionmeetings

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32 Familysupportgroups

32.1 Whatarefamilysupportgroups?

Family support groupsarewhere the caregiversofpeoplewith schizophreniawho live in the

samekebelemeetregularly.Sometimespeoplewithschizophreniathemselvesarealsopartof

the groups. The aim is to share experiences and information and provide one another with

support.Thetypeofsupportisusuallyemotionalsupport,butcansometimesbepractical.

32.2 Whyarefamilysupportgroupsimportant?

Caregiversofpeoplewithschizophreniaareoftenisolatedfromotherpeopleinthecommunity.

Theymay feel alone with their problems and that no one understands what they are going

through. Many caregivers, and sometimes also people with schizophrenia, find it useful to

discusstheirexperienceswithotherpeopleinthesamesituation.Thiscan:

• Beempoweringas ithelps caregiversandpeoplewith schizophrenia feel theyareable to

helpthemselves

• Reducefeelingsofisolationbyseeingotherpeopleinthesameposition

• Helptoworkthroughproblems,suchasdifficultiesreturningtofarmwork,bysharingideas

• Reducestressbytalkingaboutproblems

• Helptogiveideasabouthowtodealwithstigmaanddiscrimination

• Improveconfidenceandself-esteem

• Improvesocialskillsbyhavingachancetomeetwithothersinasafesetting

FamilysupportgroupsmayalsocontinueafteryouhavestoppeddoingCBRinthekebele.This

mayhelpthepositiveeffectsofCBRtocontinueafteryouhaveleft.

32.3 Howtowesetupfamilysupportgroups?

Whocanparticipateinthefamilysupportgroups?

There should usually be one family support group in each kebele. The caregivers of all the

individualsyouareworkingwithandanyotherkeyfamilymembershouldbeinvitedtojoin.In

addition,youwillbeaskedtoinvitethecaregiversofanyotherpeoplewithschizophreniainthe

kebele,butwhoarenotparticipating inCBR.Your supervisorwill giveyou informationabout

theseindividuals.YouwillnotbeaskedtoprovideanyothercomponentsofCBR(forexample,

home visits) to these additional individuals. Family support groupsmay vary a lot in size. In

somekebelestheymaybeverysmall,forexample3members.Familymembersaremorelikely

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tobenefit if thegroup isnot toobige.g.more than10people (althoughtyoucanbe flexible

dependingontheneedsofthefamilies).Insomekebelestheremaybeanetworkorgroupof

caregiversalready.Ifsoyoushouldtrytobuildonthisratherthanstartinganewgroup.

People with schizophrenia who are unwell or very disabled will usually find it difficult to

participateinthegroup.Howeversomeindividualsmayfinditusefultobeinvolved,especially

when they are getting better. Discuss with your supervisor, the family and the individual, if

possible,aboutwhethertheyshouldbe involved. If theyaretoounwellat thebeginning, this

shouldbereviewedastimegoeson.

Whendowestartthefamilysupportgroups?

Youwill invite caregivers toparticipate in the family support grouparound the time that the

familiesyouareworkingwitharemovingfromPhaseItoPhaseII.Thiswillusuallybeabout2

monthsafteryoustartworkinginthekebele,butthismayvary.Thereasonforstartingaround

PhaseIIisthatyouaremorelikelytohaveagoodrelationshipwiththefamilybythen,andyou

shouldhaveaddressedthemostimportantproblems.Howeveryoushouldinviteallfamiliesto

participate at the same time, even if some of them haven’t reached Phase II yet. Aswell as

inviting the families you are already working with, you should invite the other people with

schizophrenialivinginthekebeleataroundthistime.

Howdoweinvitefamiliestoparticipate?

Youcouldsaysomethingsimilartothistoinviteindividualsandfamiliestojoin:

‘‘Weareplanningtostarta familysupportgroupin yourkebelewhichwillallowyoutomeet

withpeoplehavingsimilar problemsasyouareexperiencing.Thiswillgiveyouopportunityto

expressyourdifficulties,gainsupportbysharing personal experiences and will help to learn

different waysoftacklingyourproblems.Wewillnotbeabletoprovideanyloans,butwestill

hopethegroupwillbehelpful.Willyoube interestedtobeapartof the group?’’

32.4 Howdoweorganisethefamilysupportgroups?

Wherewillthefamilysupportgroupsbeheld?

Thefamilysupportgroupshouldtakeplacewithinthekebele,usuallyinthehealthpost.They

couldalsotakeplaceinoneofthefamilies’homes,ifthisissuggestedbymembersofthegroup.

Thelocationshouldbeeasilyaccessibleonfootforallthemembers.

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Howoftenwillthefamilysupportgroupsmeet?

Howoftenthegroupmeetsshouldbedecidedtogetherwiththegroupmembersatoneofthe

first meetings. It should usually be about every month. Once decided, the group members

shouldagreetotryandattendallthemeetings.

Whenwillthemeetingsbeheld?

Whenthegroupmeetsshouldbedecidedtogetherwiththegroup.Itisusuallyhelpfultomeet

atthesametimeeachmonth,forexampleatearlyonthe1stSaturdayeachmonth.

Howlongwillthefamilysupportgroupmeetingslast?

Themeetingsmightlast60to90minutes,butthisshouldbedecidedbythegroupmembers.

Willweprovidecoffeeorteaatthemeetings?

Youwillnotbegivenanymoney tobuycoffeeor tea for thegroup.However thegroupmay

decidetoeachcontributeasmallamounteachmonthtobuycoffeeortea.

HowdowerecordthedetailsoftheFamilySupportGroup?

YoushouldrecordthedetailsofeachfamilysupportgroupontheFamilySupportGroupDetails

Form(Form19).

32.5 Whatdowedointhefamilysupportgroupmeetings?

Wholeadsthemeetings?

Inthebeginningyoushouldberesponsibleforleadingthemeeting.Afterseveralmeetingshave

takenplaceyoushouldtrytoidentifyagroupleaderwhocantakeoverafteryouhaveleft.The

group should decide together who the leader will be. Different group members can be the

leaderatdifferenttime.

Whatisthestructureofthemeetings?

Whoeverisleadingthegroup-youoragroupmember-isresponsibleforkeepingthestructure

ofthemeetings.Meetingsshouldnormallyfollowthesesteps:

• Welcomeallmembers,andintroducenewmemberstotherestofthegroup

• Remindthegroupwhattopicyouwilldiscussatthismeeting

• Askinggroupmemberstosharetheirexperiences,concernsandideasonthetopic

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• Attheendsummarisingthemainpointswhichwereraisedinthediscussion

• Agreewhichtopicyouwilldiscussatthenextmeetingandconfirmthetime,dateandplace

ofthemeeting

Verysmallgroupsmaybemoreinformalandnotnecessarilyfollowthesesteps.

Whatdowediscussinthemeetings?

The group members should decide what you discuss in the meetings, but you can give

suggestions. It is usually a good idea to keep to one or two topics at eachmeeting. Decide

togetherwhichtopicyouwilldiscussnextweek.Topicsmightinclude:

• Sharingproblemswithtakingmedicationandhowtoovercomethem.

• Sharingexperiencesofnegativecommentsorothertypesofdiscriminationfromcommunity

members,andhowtodealwiththesesituations

• Discussing how to improve participation in community life. Caregivers or people with

schizophreniafromdifferentfamiliesmayagreetogotogethertosocialevents

Whatshouldthebasicrulesofthemeetingsbe?

Atoneofthefirstmeetingsyoushouldagreeonthebasicrules,usingtheideasfromthegroup.

Theseshouldnormallyinclude:

• Everythingdiscussedinthegroupshouldbeconfidential

• Everyoneshouldlistentotheothergroupmembersandsharetheirownexperiences

• Nooneshouldmakejudgementsorcriticisetheothermembers

• Everyonemustrespecttheothermember’ssituation.Whatisrightforonepersondoesnot

havetoberightfortheothers.

Howdowedocumentthemeetings?

The group leader should recordwho attends andwhatwas discussed on the Family Support

GroupMeetingForm(Form20).

Whatshouldwedoifthegroupasksforaloanorequipment?

Thegroupmembersmayaskyouforfinancialhelp,foraloan,forstationaryorotherequipment

orfortraining.Ifthishappensyoushouldencouragethegrouptothinkofhowtheycanuse

theirownstrengths,skillsandresources.Explainthatunfortunatelyyouarenotabletoprovide

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anyofthesethingstothemorindeedtoanyofthegroupsyouareworkingwith.Tellyour

supervisorifthegroupcontinuetoaskyouaboutthis,andconsiderdiscussingtogether.

32.6 Howdowemakesurethefamilysupportgroupscarryonafterwehaveleft?

Fromthebeginningofthesupportgroupmeetingsyoushouldbethinkingabouthowtomake

suretheycarryonafteryouhaveleftthekebele.Herearesomewaystodothis:

• Make sure the group discusses topics that are important to the members. If they are

benefittingfromthegroupitismorelikelytocontinue.

• Tellthegroupthatyouwillsupporttheminthebeginningbutthatyouhopetheywillrunit

bythemselveslateron,oncetheyareready.

• Findagroupleaderfromwithinthegroupafterthefirstfewsessions.

• Bepreparedforthegrouptotakealongtimetogetstartedandtorunbyitself.

32.7 Summary

• Family support groups are where caregivers of individuals, and sometimes people with

schizophreniathemselves,providesupporttooneanother

• Theyareempoweringfortheparticipants,andreducefeelingsofstressandisolation

• Thegroupsshouldhave5-10membersandshouldmeetaboutevery15days.

• Youshouldleadthegroupinitiallythenlateragroupmembershouldlead.Youshouldtryto

ensurethegroupcarriesonafteryouhaveleft

• Discussion topics can include: sharing problems, sharing experiences, improving

participationincommunitylife

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SECTIONC:Knowhowyouwillbesupported

todeliverCBR

RISE

173

33 CBRworkerwellbeing

33.1 WhatproblemswithwellbeingmightCBRfieldworkershave?

Working with people with mental illness is often rewarding but you may sometimes find it

stressful.Stressisn’talwaysbad,butitcancauseproblems.Theseproblemsinclude:

• Worryingallthetime

• Sleepingbadly

• Beingirritable

• Drinkingtoomuchalcoholorchewingkhat

• Notwantingtobewithpeople

• Physicalhealthproblems(highbloodpressure,pepticulcerdisease)

• Conflictswithyourworkcolleaguesoversmallthings

• Problemswithrelationshipsathome

• Developingdepressionorananxietydisorder

33.2 WhymightCBRfieldworkershaveproblemswithwellbeing?

Herearesomeofthereasonswhyyoumighthaveproblemswithyourwellbeing:

• Youfeelyouhavetoomuchtodo

• Youareworriedaboutyourpersonalsafety.

• Youfeeltherearehighexpectationsfromothersortheindividualsaren’tmakingenough

progress

• Youhavetomakedifficultdecisions

• Youdon’thaveenoughsupport

• Workingwithpeoplewithmanyproblems,youmaytakeontheirworriesasyourown

33.3 WhyisitimportantforCBRworkerstolookafterthemselves?

Itisveryimportantforyoutolookafteryourself.Itwillbedifficulttohelpthepeopleyouare

workingwithifyouarenotlookingafteryourselfandfeelingwell.Youmightfeelthatadmitting

youfeelstressedorunhappyisasignofweaknessorlackofcommitmenttoyourwork.Thisis

nottrue.

33.4 Howcanyoumaintainyourwellbeing?

1.Reducingstress

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Herearesomeideastomakesurestressdoesn’tcauseproblemsforyou:

• Don’tworkallthetime–inyourresttimes,meetupwithfamilyandfriends,dothings

youenjoyandtrytorelax

• Eatadequately

• Trytomaintainaroutine

• Discussworkproblemswithanotherperson,forexampleyourspouseorafriend

• Don’tbeafraidtoaskformoresupport.

• TrytherelaxationtechniquesinChapter23.

2.Discussyourwork

Youshouldhavelotsofopportunitytodiscusshowyourworkisgoing,andanyproblemsyou

arefacing(seeChapter34).Theseinclude:

• Meetingwithyoursupervisoronceeverytwoweeks

• MonthlygroupsupervisionwithotherCBRworkers

• Youcancallyoursupervisoratanytimeifyouarefacingdifficulties.

Rememberthatitmighttakealongtimetoseepositivechangesintheindividualsyouare

workingwith.Trytostaypositiveandthinkaboutthesmallchangeswhichhavehappenedsince

youstarted.

3.Seekhelp

TherearetwosituationswhereyoushouldlookforhelpSTRAIGHTAWAY:

• Suicidalfeelings.Ifyoufeelsohopelessthatyouarethinkingthatlifeisnotworthliving,or

even thinking about ending your life it is very important to discuss these feelings with

someoneyoutrust.

• Problemswithalcoholorkhat.Ifyouareconcernedthatyouhaveaproblemwithalcohol

orkhatoryourfriendsorrelativestellyoutheyareconcerned,youshouldtrytogethelp.

Togethelpyoucanalsotalktoyoursupervisororgotothehealthcentre.

4.Keepsafe

Thefollowingstepsaredesignedtoensureyoufeelsafewhilstatwork:

• Yoursupervisorshouldaccompanyyouonfirsttwohomevisitstoeachindividual

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• Foreachindividual,yoursupervisorwillundertakeaCBRworkersafetyassessmentofthe

risktoyouandthesupervisor

• Youshouldalwayscarryamobilephone.Youwillbeprovidedwithcredit.

• Youshouldensurethatthereisafamilymemberpresentatallhomevisits.Thisshouldbe

emphasisedtothecaregiverduringyourfirstvisits.

• Ifthereisahighrisktoyoursafety,yoursupervisorwillaccompanyyouonthehomevisits

• Ifthereisamediumrisktoyoursafety,youshouldcallyoursupervisoratthebeginningand

theendofeachvisit

5.Knowhowtodealwithaviolentoraggressiveperson

• Beawareofthesignsthatsomeoneisgoingtobecomeviolent.Theseinclude:

o Talkinglouderorbecomingthreatening

o Fistsopeningandclosing

o Breathingfast

o Fidgeting

o Tapping,punchingorslappingtables,wallsorthefloor

• Beawareiftheindividualsmellsofalcohol,islosingtheirbalanceorhasslurredspeech.This

mightmeantheindividualisdrunkandismorelikelytobeviolent

• Thinkaboutyourownfeelings.Ifyoufeelscaredyoushouldstopthehomevisitandleave

thehouse.

• Makesurethatbothyouandtheindividualcanreachthedoorofthehouseeasily.

• Speakinaclearandcalmvoice.Donotshouttotryandcalmtheindividual.

• Lettheindividualknowthatyouwanttohelpthem.

• Don’ttellthemthattheycan’treallyhearvoicesorthattheirbeliefsarewrong.

• Donotthreatentheindividualorcorrecttheirswearing.Thiswillonlymakeitworse.

• Iftheindividualhasaweapon,reassurethemthatyouareheretohelpthemandthereisno

needforaweapon.Iftheyrefusetoputdownorhandovertheweapon,youshouldstop

thehomevisitandleavethehouse.

• Iftheindividualbecomesviolenttellhimtocalmdownbyfirmreassurance.Ifthisisnot

possibleyoushouldstopthehomevisitandleavethehouse.

• Aftertheincidentcallyoursupervisortotellthemwhathashappenedandagreetogether

anystepsyouneedtotakenow.

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33.5 Summary

• WhilstworkingasaCBRworkeryoumaysometimesfeelstressedorunhappy

• Thismayhappenifyoufeelyoudonothaveenoughsupportoryouareworriedaboutyour

safetyorhaveotherproblemsinyourlifetodealwith

• Itisimportantforyoutostaywellsothatyoucanhelptheindividualsyouareworkingwith

properly

• Ways to stay well and happy include: reducing stress, discussing your work with others,

seekinghelp if youneed to, keeping safeandknowinghow todealwitha violentperson

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34 Supervision

34.1 Whatissupervision?

Supervision is where somebody else supports you in your work and gives advice on how to

improvethewayyouareworking.

34.2 Whyissupervisionimportant?

Itisimportantthatyouaresupervisedforthefollowingreasons:

• Tomakesurethatalltherightstepsaretakenforeachindividual,forexamplethatreferrals

tothehealthcentrearemadeattherighttime.

• TomakesurealltheindividualsreceivingCBRaresupportedinasimilarway.Eventhough

eachindividualwillreceiveadifferentversionofCBR,dependingontheirneedsandgoals,

there are some things that should be the same for everybody. These include your

relationshipwiththeindividualandhowwellyoudocumenttheirprogress.

• Tomakesureallthekebeleshavesimilarcommunityengagement,forexamplecommunity

awarenessraising.

• Tomakesuregapsinyourknowledgeareidentified,sothatyoucanreceiveextratraining

andsupportifyouneedit.

• TomakesureyouaresafeandwellwhilstdeliveringCBR

34.3 Whoisinvolvedinsupervision

YouandtheotherCBRworkers

You and the other CBR workers will get lots of experience with working with people with

schizophreniawhilstdeliveringCBR.Youwillprobablyfinditusefultosharetheseexperiences

andhearabouthowothershaveovercomedifficulties.

Yoursupervisor

Your supervisorwill be yourmain sourceof supervision. Theyhaveexperience in supervising

CBRworkers.

Theinterventionco-ordinator

Theinterventionco-ordinatorwillsuperviseyourfieldsupervisor.Youwillnothaveverymuch

contactwiththeinterventionco-ordinator.

34.4 Howwillyoubesupervised?

Therearefourwaysinwhichyouwillbesupervised.

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1. Facetofacediscussion

Who?Youandyoursupervisor

When?Every15daysatapre-arrangedmeeting

Where?Atthehealthcentreorahealthpost

What?• UsingthemostrecentHomeVisitForms(Form11)andthelogbooksyouwilldiscussthe

progressofeachindividualyouareworkingwith,including:

o Generalhealthandsymptoms

o Whethertheyaretakingmedication

o Whetheranyriskshavebeenidentified,particularlysuiciderisk

o Modulesyouareworkingonandmodulesyouhavecompleted

o Progressoncurrentgoals

o Anyproblemsordifficultiesachievingthegoals

o Practicalissues

o Safetyissues

• YouwillrecordanyactionsthatyoursupervisorsuggestsonthemostrecentHomeVisit

Form.Youwillneedtomakesureyouusethesesuggestionsinyournexthomevisit.Atthe

nextFacetoFaceDiscussionyoursupervisorwillcheckwhetheryouusedthesuggestions.

• Usingyourkebelelogbooksyouwilldiscusstheprogressofthecommunityengagement,

including:

o Communityengagementactivitiescarriedoutandplanned

o Anyproblemswithcommunityengagement

• Youwilldiscussyourtimetableforthenextfortnight.Bothyouandyoursupervisorwillthen

havearecordofwhichindividualsyouplantovisit,andwhatcommunityengagement

activitiesyouplantodo,oneachday.SeeForm13.

• Yoursupervisorwillidentifyanytrainingneedsthatyouhaveandupdateyourknowledgeor

skillsifneeded.YoushouldrecordthispartofyourdiscussionontheSupervisionRecord

Form(Form21).

• Youwillarrangeyournextsupervisionmeetingandanyjointhomevisitswhichareneeded

2. PhonecontactWho?Youandyoursupervisor

When?Wheneveryouneedadviceorsupport

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Where?Bymobilephone

What?

• Youcancallyoursupervisoratanytimetodiscussproblemsorquestionswhichariseduring

yourwork

• Therearecertainsituationswhereyoushouldalwayscallyoursupervisor.Theseinclude:

o Individualisatriskofsuicide,chaining,neglect,physicaloremotionalabuseinsideor

outsidethehome,orsexualviolence(seeChapter14andChapter35)

o Youhavemadeanurgentreferralfortheindividualtoattendthehealthcentre(see

Chapter36)

• YouwillrecordanysuggestionsthatyoursupervisormakesonthemostrecentHomeVisit

Form,ifitrelatestoanindividual,orontheSupervisionRecordFormifitrelatestoyour

owntrainingneeds.Youwillneedtomakesureyouusethesesuggestionsinyournext

homevisit.

3. Unannouncedobservedhomevisits

Who?Youandyoursupervisor

When?Abouteverymonthtotwomonths,butyouwillnotknowthetimeordayinadvance

Where?Atanindividual’shome

What?

• Youwillcarryoutthehomevisitasnormal,butyoursupervisorwillalsocometothehome

andobserveyouworking.Theywillbelookingat:

o Howgoodyourrelationshipiswiththeindividualandfamily

o Howwellyoulistenandexplainthingstotheindividualandfamily

o Whetheryoudomodulesortaskswhichseemrightfortheindividualatthattime

o Howwellyouwritedownwhathappenedduringthehomevisit

• Afterthehomevisit,usuallyatthehealthpostorhealthcentre,thesupervisorwilltellyou

howwelltheythinkyouareworking.Theywillalwaysgiveyousomepositivefeedback,as

wellastellingyouaboutanyproblems.

• Youwilldiscusstogetherhowyoucanimprovethingsifthereareanyproblems.Your

supervisormaygiveyoumoretrainingifyouneedit.

• YouwillrecordanysuggestionsthatyoursupervisormakesonthecurrentHomeVisitForm

ifitrelatestotheindividual,oronaSupervisionRecordFormifitrelatestoyourown

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trainingneeds.Youwillneedtomakesureyouusethesesuggestionsinyournexthome

visit.

4. Groupsupervision

Who?You,alltheotherCBRworkersandbothfieldsupervisors

When?Everymonth

Where?Atahealthcentre

What?

• Priortothemeetingyoushouldtrytothinkofoneortwospecificproblemsorissuesthat

youhavefacedthatyouwouldlikesomesupportwith.Thesemightberelatedto:

o Issueswithdeliveringthemodulese.g.thebestwaytogiveadviceaboutselfcare

o Issueswithworkingwithpeoplewithschizophreniae.g.Howtoreactwhenan

individualisunwellandhallucinating

o Issueswithcommunityengagementworke.g.howtoworkwithanobstructive

communityelder

o Practicalissuese.g.howtousepublictransporttogettoaparticularlocation

o Yourownwellbeinge.g.howtobalanceworkandhomelife

• Duringthesessionthesupervisorwillfacilitatethediscussion.Theywillaskoneofyouto

brieflypresentyourproblemorquestion.TheotherCBRWswillthenhaveachancetoask

youquestionstomakesureeveryoneunderstandswhatyourissueis.

• ThesupervisorwillthenaskforideasandadvicefromyouandtheotherCBRworkersfor

howtoovercometheproblem.ItmaybeusefulforotherCBRworkerstodescribehowthey

respondedtoasimilarsituation.

• YouwillrecordanysuggestionsthatthegroupmakesonaSupervisionRecordForm.You

willneedtomakesureyouusethesesuggestions,forexampleatyournexthomevisit.

• ThesupervisorwillthenaskthenextCBRworkertopresenttheirproblem.Ineachsession

aroundhalfoftheCBRworkerswillhavechancetopresenttheirissue.

• Thesupervisorswillalsoupdateyourknowledgeorskillsbasedonissuesthatcomeup

duringthegroupdiscussion,orwhichtheyhavenoticedfromfacetofacediscussionsor

observedhomevisits.

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34.5 Summary

• It is importantthatyouaresupervisedtomakesurealltherightthingsarebeingdonefor

eachindividual;tomakesureyourskillsareuptodateandthatyouaresafe

• Every15daysyouwillhaveaFacetoFaceDiscussionwithyoursupervisortodiscusseach

individualandkebeleyouarelookingafter,yourtimetable,andanytrainingneeds

• Youcancall your supervisoratany time for support.Youshouldalsocall themwhenyou

identifycertainrisksorifyouhavemadeareferraltothehealthcentre

• Yoursupervisorwillmakeanunannouncedhomevisitaboutonceamonth

• Youwill have a Group Supervision session everymonth to discuss issueswith other CBR

workersandshareideas.

• You should record any supervision on themost recent HomeVisit Form or a Supervision

RecordForm

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35 Dealingwithdifficultsituations

35.1 Whatdifficultsituationsmightyoucomeacross?

Asyou learnt inChapter14,peoplewithschizophreniaarevulnerable tomany typesof risks.

These include: suicide attempt or suicide risk, chaining, neglect, physical abuse outside the

home,physicaloremotionalabuseinsidethehomeandsexualviolence.

Otherdifficultsituationsyoumightcomeacrossinclude:

• Theindividualcommitssuicideordiesfromanothercause

• The individual is admitted tohospital due to a serious side effect from the anti-psychotic

medication,orduetoanyotherseriousmedicalemergency

• Theindividualisviolentoraggressivetowardsyouorothers

35.2 Whyisitimportanttoknowhowtodealwithdifficultsituations?

Itisimportantthatyouknowhowtodealwithdifficultsituationssothattheindividualcanget

thebestcareandsupportavailableassoonaspossible.Thiswill leadtoabetteroutcomefor

theindividual,familyandthecommunity.

35.3 Howshouldyoudealwithdifficultsituations?

In this section there is a summary of what you should do for each difficult situation. Your

prioritieswhendealingwithdifficult situationsarealways toensureyourownsafetyand the

safetyof the individual.Wheneveryou send the individual to thehealth centre,writeon the

Health Centre Referral Form (Form 14) the reason for the referral and ask the individual or

caregiver to show the form to the nurse or health officer. Keep a copy of the form for the

participant logbook. You shouldonly call thepolice if you stronglybelieve the individual is in

immediatedangerofbeingseriouslyhurtbysomeone.

Solidarrow:alwayscontinuetothenextstep

Dashedarrow:continuetothenextstepiftheredwritingistrueinthissituation

KEY

183

Figure1Attemptedsuicideflowchart

Youoryoursupervisorfindouttheindividualhasa3emptedsuicide

Addressreasonfornota,endinghealthcentre.Thismayincludeeduca7ngthefamilyand/orge9ngfinancialorprac7cal

communitysupport

Nurseorclinicalofficerwillcarryoutclinicalassessment

Immediatelyinformyoursupervisor,iftheyarenotaware

Arrangeajointhomevisitwithyoursupervisor.Iftheyhavenota,endedthehealthcentre,atthevisitsfindoutwhynot.

Iftheindividualdoesnota,endhealthcentrewithin1week

Checktheindividualistakingmedica7onandencouragefamilytotakeindividualtohealthcentreimmediately

Informthetrialco-ordinator

Immediatelyinformthetrialpsychiatricnurse,whowilldoahomevisit

Advisethefamilynottoleavetheindividualunaccompaniedandtoremoveanyitemswhichcouldbeusedforsuicidea,empt

184

Figure2Riskofsuicideflowchart

Youoryoursupervisoriden.fyindividualisatriskofsuicide

Addressreasonfornota,endinghealthcentre.Thismayinclude

educa7ngthefamilyand/orge9ngfinancialorprac7cal

communitysupport

Yoursupervisorwillarrangeareviewathomebytrialpsychiatric

nurse

Nurseorclinicalofficerwill

carryoutclinicalassessmentInformyoursupervisorassoonaspossible,iftheyarenotaware

Arrangeajointhomevisitwithyoursupervisor.Iftheyhavenot

a,endedthehealthcentre,atthevisitsfindoutwhynot.

Iftheindividualdoesnota,endhealthcentre

within1day

Checktheindividualistakingmedica7onandencouragethe

familytotakeindividualtohealthcentreimmediately

Ifthepsychiatricnurseassessestheindividualis

mediumorhighrisk

Yoursupervisorwilldoariskassessment

Yoursupervisorwilldiscusstheriskassessmentwiththe

psychiatricnurse

Advisethefamilynottoleavetheindividualunaccompaniedand

toremoveanyitemswhichcouldbeusedforsuicidea,empt

Iftheindividual

a,endshealth

centrebutthere

areon-going

suicidalthoughts

185

Figure3VIolentoraggressiveindividualflowchart

Theindividualisviolentoraggressive

Takestepstoensureyourownsafety:• Makesurethatbothyouandtheindividualcanreachthedoorofthehouse.• Iftheindividualhasaweapon,reassurethemthatyouareheretohelpthemandthereisnoneedforaweapon• Ifyoufeelscaredyoushouldstopthehomevisitandleavethehouse.

Informyoursupervisora=ertheincidentandagreetogetheranystepsyouneedtotakenow.Donotvisitthehomeun@lyouhavepermissionfromyoursupervisor

Checktheindividualistakingmedica@onandencouragethemtodoso

Encouragefamilytotakeindividualtohealthcentre

Takestepstocalmtheindividual:• Speakinaclearandcalmvoice.Donotshouttotryandcalmtheindividual.• Lettheindividualknowthatyouwanttohelpthem.• Don’ttellthemthattheycan’treallyhearvoicesorthattheirbeliefsarewrong.• Donotthreatentheindividualorcorrecttheirswearing.

Yoursupervisormayarrangeforreviewathomebytrialpsychiatricnurse

186

Figure4Restrainedorchainedindividualflowchart

Youiden)fyindividualisrestrainedathome

Addressreasonfornota,endinghealthcentre.Thismayincludeeduca7ngthefamilyfamilyand/orgetfinancialorprac7cal

communitysupport

Yoursupervisorshouldarrangeforreviewathomebytrialpsychiatricnurse


Checktheindividualistakingmedica7onandencouragefamilytotakeindividualtohealthcentre


Iftheindividualiss7llrestrainedand/ordoesnota,endhealthcentrewithin1week

Educatethefamilytominimiseharmfromchaining

Informyoursupervisorthesameday

Iftheindividualiss7llrestrainedand/ordoesnota,endhealthcentrewithin1week

187

Figure5Physicalabuseoutsidethehomeflowchart

Youiden)fyindividualisvic)mofphysicalabuseoutsidethehome


communitysupport



Checktheindividualistakingmedica7onandencouragefamilytotakeindividualtohealthcentreifunwell/notreviewedrecently


Iftheabusecon7nuesand/ortheindividualdoesnota,endhealthcentrewithin1week


Iftheabusecon7nuesand/ortheindividualdoesnota,endhealthcentrewithin1week

Ifthereisareligiousortradi7onalhealerinvolved,educatetradi7onalorreligioushealeraboutpoten7alharm

188

Figure6Physicaloremotionalabuseinsidethehomeflowchart

Youiden)fyindividualisvic)mofphysicaloremo)onalabuseinsidethehome

Addressreasonfornota,endinghealthcentre.Thismayincludeeduca7ngthefamilyfamilyand/orgetfinancialorprac7calcommunitysupport






Speakwithapersontrustedbytheindividual,orneighbours,orlocalcommunityleadertofindasolu7on

Provideindividualwithdetailsofrelevantorganisa7onsandwhattheycandotohelp

WorkthroughModule:Improvingthefamilyenvironment

Domes7cviolencepersistsandindividualwantshelpORdoesnothavecapacity

Domes7cviolencepersistsandindividualwantshelpORdoesnothavecapacity

Discussstrategiesforindividualtofollowifabusehappensagaine.g.seekingrefugeatneighbourshouse

IfDomes7cviolencepersistsand/ortheindividualhasnota,endedthehealthcentrewithin1week

Callthepolice

Iftheindividualisatimmediateriskofseriousharm

189

Figure7Sexualviolenceflowchart

Youiden)fytheindividualisavic)mofsexualviolence

Nurseorclinicalofficerwill

carryoutclinicalassessment

and,ifappropriateoffer:

• emergencyfamilyplanning

• treatmentforsexually

transmi:eddiseases

• aHIVtest

Encouragefamilytotakeindividualtohealthcentre


Helptheindividualdecidewhethertocallthepolice

ProvideindividualwithdetailsofrelevantorganisaConsandwhatthey

candotohelp

Reassuretheindividualitisnotherfault

Encouragetheindividualtoshareherexperiencewithafamilymemberor

friend

Increasethefrequencyofhomevisits

Supporttheindividualtoinformthepoliceifthisisherdecision

Iftheindividualdoesnot

wishtoinformthepoliceor

familyyoursupervisor

shouldarrangeforreviewat

homebytrialpsychiatric

nurse.Trialpsychiatricnurse

decideswhetherthe

individualiswellenoughto

maketheirowndecisions.If

theyarenotwellenough

thenyoursupervisormay

decidetotellthefamilyor

police.

190

Figure8Neglectedormalnourishedflowchart

Youiden)fyindividualisbeingneglectedormalnourished


communitysupport





Iftheneglectcon7nuesand/ortheindividualdoesnota,endhealthcentrewithin1week

Informyoursupervisorassoonaspossible

Iftheneglectcon7nuesand/ortheindividualdoesnota,endhealthcentrewithin1week

191

Figure9Riskstochildrenflowchart

Youiden)fyriskstochildreninsidethehome

Addressreasonfornota,endinghealthcentre.Thismayincludeeduca7ngthefamilyfamilyand/orgetfinancialorprac7calcommunitysupport






Speakwithapersontrustedbytheindividual,orneighbours,orlocalcommunityleadertofindasolu7on

WorkthroughModule:Improvingthefamilyenvironment

Ifriskstochildrencon7nue

Increasethefrequencyofhomevisits

Ifriskstochildrencon7nueand/orindividualhasnota,endedhealthcentrewithin1week

Callthepolice

Ifthechildisatimmediateriskofseriousharm

192

Figure10Hospitalisationflowchart

Figure11Suicideordeathfromothercauseflowchart

Youoryoursupervisorfindouttheindividualhasbeenadmi5edtohospitalduetoasideeffectofan9-psycho9cmedica9onoranotherseriousmedicalemergency

Informyoursupervisorassoonaspossible,iftheyarenotaware

Youencouragetheindividualtoa:endthehealthcentre


Youandyoursupervisordoajointreviewathomea=ertheindividualisdischarged


Youoryoursupervisorfindouttheindividualhascommi5edsuicideordiedofanothercause

Informyoursupervisorassoonaspossible,iftheyarenotaware

Ifassessedtobeappropriatebysupervisor,CBRWandsupervisormakehomevisittofamily.Assessongoingneeds.


Informthehealthcentre

193

Figure12Individualisunwellorgettingworse

Youiden)fyindividualisunwellorge3ngworse


communitysupport



Checktheindividualistakingmedica7onandencouragefamilytotakeindividualtohealthcentre


Iftheindividualiss7llunwelland/ordoesnota,endhealthcentrewithin1week


Iftheindividualiss7llunwelland/ordoesnota,endhealthcentrewithin1week

194

35.4 Summary

• It is important you knowhow todealwithdifficult situations tomake sure the individual

getsthebestcarepossible

• Thereisasetofactionsyoushouldtakeforeachdifficultsituation

195

36 Linkstohealthservices

36.1 Whatarelinkstohealthservices?

Linkstohealthservicesareanycommunicationthatyouhavewith:

• Thehealthcentre

• Thehealthextensionworkers

36.2 Whyisitimportanttohavelinkstohealthservices?

All the individuals youareworkingwithhaveaccess tomedical care for schizophrenia at the

health centre. It is part of your role to ensure that the individual attends the health centre

regularly,asthiswillhelpthemtorecover(seeChapter17).Therearesomesituationsthatare

too complicated for you todealwith, forwhich you should send the individual to thehealth

centre.Thereareothertypesofwork,forexamplegivingadviceaboutfamilyplanning,which

youhavenotbeentrainedfor,soyoushouldinvolvethehealthextensionworker.Keepinglinks

withhealthserviceswillensuretheindividualcangetthebestpossiblecare.

36.3 Howdoyoukeeplinkstohealthservices?

Introduceyourselfatthehealthcentre

AtthebeginningoftheCBRprogrammeyouandyoursupervisorwillintroduceyourselftothe

healthcentreheadandthenursesandclinicalofficers.TheywillalreadybeawareoftheCBR

programmebutyoucanremindthemofyourrole.

Regularappointmentsatthehealthcentre

Eachindividualshouldgotothehealthcentreevery1to3months.Youshouldbeawareofall

the appointments they have, and check if they have attended. If they have missed an

appointment,evenifyouarenotdueforahomevisit,youshouldmakeahomevisittocheck

foranyproblemsandremindthemtoattend.

Specialsituations

Youshouldsendtheindividualtothehealthcentreinanyofthefollowingsituations:

• Youthinktheindividualisatriskofcommittingsuicide(SeeChapter14and35)

• Youareworriedthattheindividualisnoteatingordrinking(SeeChapter35)

196

• Youareworriedthatchildrenmaybeatriskofharmfromtheindividual(SeeChapter35)

• Theindividualhasharmedsomeoneelseoryouareworriedthisisgoingtohappen

• Theindividualhasarelapsei.e.isveryunwellwithsymptomsofschizophrenia(Chapter30)

• Theindividualbecomepregnant.Youshouldalsoinformthepsychiatricnurse.

• Theindividualhasanewphysicalhealthproblemorphysicalinjury(Chapter21)

• Theindividualhasaseriousproblemwithalcoholorkhat(Chapter21)

• Theindividualhasseriousside-effectsoftheanti-psychoticmedication(seeChapter20for

descriptionofsideeffects).

• You would like the nurse to review the medication schedule or consider the injection

(Chapter20)

Youshouldtellyoursupervisorifanyofthesesituationshappen.Advisethefamilytotakethe

individualtothehealthcentreassoonaspossibleandgivethemsupportinmakingthejourney.

Thismayincludefindingothercommunitymemberswhocanhelpthefamily(seeChapter31).

Recordonthehomevisitformthatyouhavereferredtothehealthcentre.WriteontheHealth

CentreReferralForm(Form14)thereasonforthereferralandasktheindividualorcaregiverto

show the form to the nurse or health officer. Keep a copy of the form for the participant

logbook.Youcangoto thehealthcentrewith the individual. Ifyouaccompanythe individual

youshouldcompleteaHealthCentreContactForm(seeForm2).Oncetheyhavereturnedfrom

thehealthcentreyoushouldcontinuetodeliverCBRasnormal.Ifyoufindthatthecaregiveris

verydistressedyoucansuggesttheygotothehealthcentre(seeChapter15).

HealthExtensionProgramme

Thehealthextensionworkersshouldbecontinuingtoprovidetheirusualcaretotheindividuals

youareworkingwith.Youshouldaskthehealthextensionworkertovisittheindividualifthey

needsupportwithcontraception, sanitationadvice,ormalariaprevention,and theyhavenot

received a home visit. Health extension workers are not expected to assist with CBR, for

examplehelpwithself-care.

36.4 Summary

• It is importanttohave linkswiththehealthcentreandhealthextensionworkertoensure

theindividualhasthebestcarepossible.

• You should send the individual to thehealth centrewhen: they are at risk of committing

suicide, they are not eating or drinking, they have harmed someone else, they are very

197

unwellwithschizophrenia,theyarepregnant,theyhaveaphysicalhealthproblemorthey

haveserioussideeffectsofanti-psychoticmedication.

• YoushouldasktheHEWtovisitiftheyhavenotdeliveredtheirusualcaretotheindividual

• Ifanindividualmissesaroutineappointmentatthehealthcentreyoushouldremindthem

toattend

198

37 Gooddocumentation

37.1 Whatisgooddocumentation?

Gooddocumentationmeansthatyouwritethingsdown,forexampleaboutahomevisit, ina

waythat:

• Youareabletolookbackandrememberwhathappened.

• Otherpeople,forexampleyoursupervisor,canunderstandwhathappenedwithouthaving

toaskyou

• The individual and family can read what you have written and they think it is a good

descriptionofwhathappenedduringthevisit

37.2 Whyisitimportanttohavegooddocumentation?

WhenyouaredoingCBRwithmanyfamiliesatthesametimeitmaybedifficulttoremember

thedetailsofwhathappenedevery timeyou seea family.Bykeepingagood recordofeach

individual’sprogress,youwillbemuchbetterathelpingthemeachtimeyouseethem. Itwill

alsobeeasierforyoursupervisortocheckthatyouarelookingafterindividualsintherightway,

andgiveyouadviceonhowtoimprovethewaythatyouareworking.Theindividualandfamily

youareworkingwithmayasktoseewhatyouhavewritten.Itisfineforyoutoshowthem.

37.3 Whatdoweneedtodocument?

Foreach individualyouare lookingafteryouwillkeepan individual logbook.Thiswill include

thefollowingforms:

• Initialcontactform(Form1)

• HealthCentreContactForm(Form2)

• CBRReviewForm(Form3)

• NeedsAssessmentForm(Form4)

• GoalssettingForms(Forms5and6)

• RiskassessmentForm(Form7)

• Rehabilitationplan(Form8)

• ContinuingCareForm(Form9)

• Homevisitformsforeachvisit(Form11)

• VisitSummaryForms(Form12)

• HealthCentreReferralForm(Form14)

199

• Medicationchecklist(Form15)

• DaytoDayfunctioningProgressForm(Form16)

• EarlyWarningsignschecklist(Form17)

• RelapseManagementPlan(Form18)

• SupervisionRecordForms(Form21)

Foreachkebele youareworking in youwill keepa kebele logbook (Form I). Youhave learnt

aboutwhatinformationtorecordintheselogbooksinothersectionsofthemanual.

37.4 Howdowemakesurewehavegooddocumentation?

Thesearethethingsyoucandotomakesureyouhavegooddocumentation:

• Writeinaclearandlegibleway

• WriteinAmharic

• Writedownenoughdetailsothatyouandsomeoneelsewillbeabletounderstanditlater

• Make sure youwould be happy for the individual and family to readwhatever youwrite

down.

• Useapeninsteadofapencil

• Keep all your logbookswith you at all timeswhen you areworking in the field. At other

timeskeeptheminasafeplace.

• Keepyourlogbooksdryandclean

• Yoursupervisorwillcheckyourdocumentationeverysooftenandwillgiveadviceonhowto

improveitifnecessary

37.5 Summary

• Gooddocumentationiswhereyourecordthingsinawayitiseasytounderstandlater

• It is important to make sure you and your supervisor can easily follow the progress of

individuals

• Youwillkeepanlogbookforeachindividualandeachkebele

• You can ensure good documentation by:writing clearly, keeping logbooks dry and clean,

writinginpenandwritingenoughdetail

200

38 Howtodealwithotherpeoplewithproblems

38.1 Whatotherproblemsmightyoucomeacross?

DuringyourCBRworkyoumaycomeacrosspeople,apartfromtheindividualsyouareworking

with,whohaveproblems.Thesemightinclude:

• Peoplewith schizophreniawhohavebeenoffered care at thehealth centrebutwhoyou

havenotbeenasked to lookafter.Theymight live inakebelewhereyouareworking,or

anotherkebelewhereyouarenotworking.

• Peoplewhoyouthinkmayhaveschizophreniabutwhoarenotreceivingcareatthehealth

centre

• Peoplewithothersortsofmentalhealthproblems,forexamplealcoholproblemsinadults,

ordevelopmentaldelayinchildren

• Peoplewith other sorts of disabilities, for example blindness or problemswalking due to

polio

• Community members or community leaders may ask you to do community engagement

workinanotherkebele

38.2 Whymightyoucomeacrossotherpeoplewithproblems?

Inmost kebeles therewill bepeoplewith schizophreniawhoare receiving careat thehealth

centrebutwhoyouhavenotbeenaskedtolookafter.Thereasonsforthiswillbe:

• TheyaregenerallymorewellorlessdisabledsodonotneedtheextrasupportofCBR

• TheywereofferedCBRbuttheydidnotwanttoparticipate

• ThereisanotherreasonwhytheycouldnotreceiveCBR,forexampletherewasnocaregiver

abletoparticipate,ortheyhaveplanstoleavethekebelesoon.

You may be asked by the individual, family or community members to offer CBR or extra

support to these individuals. Itmay be difficult for people to understandwhy you are giving

extrasupporttosomepeoplewithschizophreniabutnotothers.

You will become good at recognising schizophrenia, and you may notice the symptoms in

peoplewhohavenotbeendiagnosedbyanurseatthehealthcentre.Orcommunitymembers

mighttellyouaboutindividualswhoarechainedupbecausetheyareunwell.

When you areworkingwithin the kebele youmight also notice other sorts of problems, for

examplephysicaldisabilities,justbyobservingthepeopleyoumeet.Thefamilyyouareworking

withmight tell youaboutproblemswithother familymembers. Community leadersorother

201

communitymembersmayseeyouasasourceofsupportandmaytellyouaboutproblemsthat

otherpeoplehave,evenifyoudon’taskthemto.

Communitymembers or community leaders from kebeles which have not been allocated to

receiveCBRmayaskyou todocommunityengagementwork in their kebele.Theymayhave

seenorheardaboutyoudoingthisworkinthekebeleswhereyouareworking.

38.3 Whyisitimportanttoknowwhattodoifyoucomeacrossotherpeoplewithproblems?

InthisCBRprogrammeyourroleistosupportthepeoplewithschizophreniathatyouhavebeen

asked to look after. However, it is important that you knowwhat to do if you come across

peoplewithotherproblems.This is tomakesurethat thesepeoplegetanycareandsupport

thatisavailable.Itwillalsohelptheindividual,familyandcommunitytotrustyoumoreifyou

knowwhattodowhenyoucomeacrosspeoplewithotherproblems.

38.4 Whatshouldyoudoifyoucomeacrosspeoplewithotherproblems?

Whatyoushoulddowhenyoucomeacrossotherpeoplewithproblemsdependsonthetypeof

problem.But thegeneral rule is toask someoneelse tohelp, rather thanhelping theperson

yourself.

1. Peoplewithschizophreniawhohavebeenofferedcareatthehealthcentrebutwhomyou

havenotbeenaskedtolookafter

• Suggestthattheyvisitthehealthcentreiftheyhavenotbeenrecently

• Explainthatunfortunatelyyoucannotofferhomevisitstothemandthatthisisoutofyour

control.

• AsktheHealthExtensionWorkertosupportthe individual, forexampleencouragingthem

toattendthehealthcentre.

• Iftheindividual livesinkebelewhereyouareworking(i.e. inakebeleallocatedtoreceive

CBR),considerinvitingthemtotheFamilySupportGroup,ifthishasalreadystarted.

• Iftheindividuallivesinkebelewhereyouarenotworking(i.e.inakebelenotallocatedto

receiveCBR),itisimportantthatyoudonotinvitethemtotheFamilySupportGroup.

• Informyoursupervisorofyourdiscussions

2. Peoplewhoyouthinkmayhaveschizophreniabutwhomhavenotyetbeenofferedcare

atthehealthcentre

202

• Suggesttotheindividualandfamilytotaketheindividualtothehealthcentre

• AsktheHealthExtensionWorkertoalsoencouragethemtoattendthehealthcentreandto

followupontheirprogress.

• Informthehealthcentrethatyouhaveaskedtheindividualtoattend

• Informyoursupervisor

3. Peoplewithothersortsofmentalhealthproblems


• Ask the Health ExtensionWorker to encourage them to attend the health centre and to

followupontheirprogress.



4. Peoplewithothersortsofdisabilities


• AsktheHealthExtensionWorkertoencouragethemtoattendthehealthcentre



• RefertheindividualtoanyrelevantNGOs

5. Communitymembersorcommunityleaderswhowantyoutodocommunityengagement

workinanotherkebele

• ItisveryimportantthatyoudoNOTdoanycommunityengagementworkinkebeleswhere

youarenotalreadyworking(i.einkebelesnotallocatedtoCBR).

• Explain that unfortunately you cannot offer community engagementwork in their kebele

andthatthisisoutofyourcontrol.

• Explainthatmedicalcareforpeoplewithschizophreniaisavailableatthehealthcentreand

thatanyonewithschizophreniawhoisnotalreadydoingsoshouldseekhelpthere.

• Givethemthenumberofthetrialco-ordinatorincasetheywishtodiscussthisfurther

• Informyoursupervisorofyourdiscussions.

203

38.5 Summary

• During CBRwork youmay come across other peoplewith problems, for example people

withmentalhealthproblems,orpeoplewithphysicaldisabilities

• Itisimportanttoknowwhattodosothatthesepeoplecangetthebestcarepossible

• Generally,youshouldnottrytolookafterthesepeopleyourself,butyoushouldtellthem

how to get help

204

39 Supportingpeoplewithintellectualdisabilityandschizophrenia

39.1 Whatisintellectualdisability?

Intellectual disability affectsthe waya personunderstands information and how they

communicate.Thismeanstheycanhavedifficulty:

• understandingneworcomplexinformation• developingasfastasotherpeople• learningnewskills• livingindependently

Someintellectualdisabilitiesarediagnosedatbirth,suchasDown'ssyndrome.Othersmightnot

be discovered until the child is old enough to talk or walk. It is possible to have both

schizophrenia and an intellectual disability. Someof the individuals you support throughCBR

mayhavebothschizophreniaandanintellectualdisability.

39.2 Whatcausesintellectualdisability?

Anintellectualdisabilityhappenswhenaperson'sbraindevelopmentisaffected,eitherbefore

they are born, during their birth or in early childhood. Severalfactors can affect brain

development,including:

• themotherbecomingillinpregnancy• problemsduringthebirththatstopenoughoxygengettingtothebrain• illness,suchasmeningitis,orinjuryinearlychildhood

Sometimesthereisnoknowncauseforanintellectualdisability.Intellectualdisabilityisnotdue

toGodpunishingchildrenorparents forsins,orduetocursesorbewitchment.Neglectingor

punishingthepersonforbeingsloworhavingdifficultbehaviourislikelytomakethingsworse.

39.3 Whatproblemsdopeoplewithintellectualdisabilityhave?

Justlikepeoplewithschizophrenia,peoplewithintellectualdisabilitiescanhavedifferentkinds

ofdisabilities.An intellectualdisability canbemild,moderateor severe. Somepeoplewith a

mild intellectual disability can talk easily and look after themselves, but take a bit longer

thanusual to learnnew skills.Othersmaynotbe able to communicate at all andhavemore

thanonedisability.

205

Somepeoplewithintellectualdisabilitiescanbequiteindependent,whileothersneedhelpwith

everyday tasks, such aswashing or getting dressed, for theirwhole lives. It depends on their

abilities. People with intellectual disability are more likely to have the following problems

comparedtootherpeople

• Physicalproblems,forexampleproblemsmovingandwalking;problemswithhearing,speechandsight;epilepsy

• Mentalhealthproblem,includingschizophrenia.• Problemssleeping• Behaviourproblems,includingdoingthingsthatthreatentheirownsafety,orthesafety

ofotherpeople;andtantrums

People with intellectual disabilities may also experience stigma and discrimination, or be

vulnerabletoexploitationandabuse.

39.4 Howshouldwecommunicatewithpeoplewithintellectualdisability?

1. Ensureyouhavetheperson’sattention.Usetheirnameanduseeyecontact2. Aperson’sabilitytounderstandmayvary,forexampleitmaybeworsewhentheyare

tiredorupset.Whenyou’renotsureoftheperson’sabilitytounderstand,itismorerespectfultoassumetheyDOunderstandratherthantheyDON’T

3. Ifyou’renotsure,checkwiththecaregiverhowtheindividualcommunicatese.g.howdotheysayyes/no?

4. Whenyouspeaktotheperson,usesimpleandclearwordsandshortsentences.5. Speaktothepersonwiththesamerespectthatyouwouldanyotheradult,ratherthan

talkingtothemlikeyouwouldtalktoachild.6. Givethepersonlotsoftimetounderstandwhatyouhavesaidandtorespond.7. Checktheperson’sunderstandingintheirownwords.8. Ifyoudon’tunderstandtheperson,youshouldsayso.Don’tpretendtounderstand.

Keepingtryingtounderstande.g.couldyouuseanotherwordtoexplain?Canyoushowme?

9. Ifthepersondoesn’tunderstandwhatyouaresaying,don’tgiveup.Keeptrying,butsayitinadifferentway.Tryusingpicturesoractionstoexplain.

10. Involvethecaregivertohelpyoutocommunicate-butfirstofallaskthepersonifthat’sok.

39.5 Whatisthetreatmentforintellectualdisability?

Thereisnospecifictreatmentforintellectualdisability,unlikeforschizophrenia.Ifapersonhas

both schizophrenia and intellectual disability they will usually be given anti-psychotic

206

medication. If a person has only intellectual disability, they will not usually be given any

medication, as this is unlikely to help. However, if they also have another condition, such as

epilepsy,theymaybegivenmedicationforthis.

39.6 Canpeoplewithintellectualdisabilityrecover?

Intellectual disability is usually lifelong, but some problems may improve. People with

intellectualdisabilitymaycontinuedevelopingand learningbutata slower ratecompared to

other people. Supporting the individual and their family you can help increase the different

kindsofactivitiestheindividualdoesandtoincreasetheirqualityoflife.

39.7 Which RISE CBR modules should we use for people with intellectual disabilities and

schizophrenia?

Ifan individualhasboth intellectualdisabilityandschizophrenia,manyof theirneedsmaybe

thesameas for individualswithonlyschizophrenia.Howevertheremaybesomedifferences.

For example, there may be more need to focus on the module ‘Improving day to day

functioning’. Progressmaybe slower amongst individualswith intellectual disabilities, so you

shouldmake sure familymembersdonot expect to see rapid changes in the individual.Also

whencoveringthemodule‘Improvingthefamilyenvironment’,thefamilymayneedparticular

supportincopingwithchallengingbehaviour.

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