Prevalence andpredictors ofpsychologicalproblems amongprincipalcaregivers of childrenwithcerebralpalsyinGalle,SriLanka1 2 3C.J.Wijesinghe,C.G.Hewage,P.FonsekaAbstractBackgroundCaregivers oIchildrenwithdisabilities are easyvictims oIpsychologicalill-health.AssessmentoI psychologicalproblems and identiIicationoIIactors predictingsuchoutcomes are vitalinidentiIying high-riskcaregivers,topreventthemIrombecomingsecondorderpatients. AimTodescribe the prevalence andpredictors oIpsychologicalproblems amongprincipalcaregivers oI childrenwithCerebralPalsy(CP)inthe Galle district.MethodsThe studyincluded375caregivers oIchildrenwithCP,attendingTeachingHospital,Karapitiya,Galle. Prevalence oIpsychologicalproblems oIcaregivers was assessedusingthe GeneralHealthQuestionnaire(GHQ). LeveloIcaregiverburden was assessedusingCaregiverDiIIiculties Scale,developedand validatedbythe authors. Anintervieweradministeredquestionnaire was usedtocollectdata onother studyvariables.Predictors oIpsychologicalproblems incaregivers were determinedusing logisticregression analysis. ResultsFiItysixpercent(95ConIidence Interval51.061.0)oIcaregivers hadGHQscores above the cut oIIthresholdIorpsychologicaldisorders.The strongestpredictorIorpresence oIpsychologicalproblemswas highleveloIcaregiverburdenOdds Ratio(OR)19.99(5.54-72.13),p0.001}.Lowereducational leveloIthe caregiverOR3.65(1.78-7.48),p0.001}andyoungerage oIthe childOR3.97(1.88-8.37),p0.001}were alsopredictive oIpsychologicalproblems.Otherpredictors includedthe use oI more treatmenttypes OR2.04(1.13-3.67),p0.05}andnotseekingsupportIorcare giving OR1.82(1.00-3.31),p0.05}.ConclusionsCaregivers oIchildrenwithCPshowa highprevalence oIpsychologicalproblems.There are a numberoI Iactors predictive oIcaregiverpsychologicalproblems,particularlythe leveloIcaregiverburden,which needtobe consideredwhendevelopinglongtermcare plans IorchildrenwithCP.Keywords:caregiverburden,psychologicalproblems,cerebralpalsy1. DepartmentoICommunityMedicine, FacultyoIMedicine,UniversityoIRuhuna. 2. DepartmentoIPsychiatry,FacultyoIMedicine,UniversityoIRuhuna, 3. DepartmentoICommunityMedicine, FacultyoIMedicalSciences,UniversityoISriJayawardenapuraCorrespondingauthor:E-mail:cjwmed.ruh.ac.lkOriginalResearcharticleJOURNAL OFTHECOLLEGEOFCOMMUNITYPHYSICIANSOFSRILANKA08IntroductionAlthough care givingis a normaland routine partoIaparent's liIe, this assumes a diIIerentperspective in parentinga childwitha chronic disablingcondition. The majority oIchildrenwith disabilities lives within theirIamilyenvironmentandrequire the helpoItheir Iamilymembers toIulIilltheirbasic care and 1treatmentneeds .ApartIromchallenges oIthe dual role oIday-to-daylivingandprovidingspecialcareIorthe child,the parents mayneedtoadjust emotionallytoacceptthe child's diIIerence Iromtheir expectations,whichcanbe a signiIicantsource oI 2stress Iorthem.Thus,care givinghas its eIIects not only oncaregiver's resources suchas time,Iinancesand relationships,butalsoontheirveryhealth.Thestrain orloadbornbythe caregivers as a resultoIcare3givingis conceptualizedas caregiverburden. Caregiverburdeninchildhooddisabilities anditsimpactoIoncaregiverhealthandwell-being have4-6been extensivelystudiedthroughoutthe world . Among the healthconsequences oIcare giving, psychologicalproblems oIcaregivers are considered7-10as the mostIrequentandserious .Psychological problems reIertoa multitude oIconditions relatingtoorarisingIromthe mindoremotions thatcaninterIere with a person's emotionalandphysical heal t h. Commonpsychol ogi cal probl ems encounteredamongcaregivers oIchildrenwith 4,7,11-disabilities include stress,depressionandanxiety13.These eIIects couldbe evenmore pronounced amongcaregivers indevelopingcountries,due to diIIicultliving conditions,limitedresources andlittle4access toappropriate services . The healthand well-beingoIcaregivers is viewedasanessentialpre-requisite IorprovisionoIqualitycare3,14tothe care recipients .RegularassessmentoI caregivers,particularlyinterms oIthe leveloIburden experiencedbythemand the impactoIcare givingon theirhealth,is a vitalstepinpreventingthemIrom becomingsecondorderpatients.Cerebralpalsy(CP)is a liIe-long,developmental disorderthatcancause a considerable degree oI burdenonthe caregivers.Itis the mostcommonIorm oIchildhoodphysicaldisabilityamongchildrenin 15-17manycountries,includingSriLanka .The global incidence oICP has remainedconstantoverthe18,19years,around2.5per1000live births .This studyisanattempttoassess the prevalence and the predictorsoIpsychologicalproblems amongcaregivers oI childrenwithCP,attendinga tertiarycare settingin SouthernSriLanka,witha specialemphasis ontheperceivedburdenoIcare giving.Materials andMethodsThe studywas a descriptive,cross sectionalstudy whichincludeda sample oIprincipalcaregivers oI childrenunder12years withCP,receivingservicesIromthe paediatric clinics,wards,Rheumatology andRehabilitationUnitandSpeechandLanguageTherapyUnitoIthe TeachingHospital,Karapitiya, Galle.Principalcaregiverwas deIinedas 'the person whoismostresponsibleIortheday-to-day responsibilities oIprovidingcare tothe childwith CP',basedontheirselI-identiIication.The samplesize Iorthe studywas calculated usingthe Iormula20givenbyLwanga andLemeshow ,toestimate thepopulationproportionoIpsychologicalproblems, whichwas consideredtobe 42basedonavailableevidence (4).Consideringa conIidence leveloI95 andanabsolute precisionoI5,the computed sample size Iorthe studywas 374caregivers. PrincipalcaregiverswithadiagnosisoIa psychologicalorpsychiatric disorderpriortothediagnosis oICP inthe child,those whohave other care givingresponsibilities suchas caringIoradisabledadultoranelderlypersonandthose wholiveoutside the districtoIGalle were excludedIromthesample.Ethicalclearance Iorthe studywas obtained Iromthe EthicalReviewCommittee oIthe FacultyoI Medicine,UniversityoIRuhuna. PrevalenceoIpsychologicalproblemsoIthe caregivers was determinedusinga Sinhala versionoI the 30-itemGeneralHealthQuestionnaire (GHQ), whichwas translatedandvalidatedIorSriLankan populationandwhichhas beensuccessIullyusedIor 21,22researchpurposes inSriLanka .AGHQscore oI6 orabove was consideredas evidence Iorpresence oI psychologicalproblems inthe caregivers. The leveloIcaregiverburden was assessedusing CaregiverDiIIicultiesScale(CDS),aselI administeredquestionnaire developedandvalidated bythe authors usinga combinedqualitative-23quantitative approach .CDSincludes appropriateitems selected Iromexistingcaregiverassessment instruments,identiIiedthroughconsensus oIa panel JOURNAL OFTHECOLLEGEOFCOMMUNITYPHYSICIANSOFSRILANKA09oIexperts who were involvedin provisionoIhealth andsocialcare IorchildrenwithCP.Italso includesnewitems reIlectingexperiences oIcaregivers inthelocalsocio-culturalcontext,whichwere developed through keyinIormantinterviews withcaregiversand service providers oIchildrenwithCP.This 25-iteminstrumentis a multidimensionalscale withIour subscales measuring(i)caregivers'concerns Iorthechild,(ii)impactonselI,(iii)supportIorcare giving, and(iv)socialandIinancialconcerns.EachitemisIollowedbya Likertscale with Iive responsealternatives,indicatingthe extentorIrequencyoI occurrence oIthe care givingexperience described bythatparticularitem.The score assignedIoreach response varies Irom0-4, leadingtoa maximum possible score oI100.The Iace validity,contentvalidityandconsensual validityoICDSwas establishedthroughthe processoIitemgeneration.The constructvalidityoICDS was conIirmedusinga sample oI90caregivers,by demonstratinganticipatedcorrelations (r 0.3)oI CDSscore withtwohypothesizedconstructs: caregiverqualityoIliIe andseverityoIdisease inthe23care recipient .Alldimensions oIcaregiverquality oIliIe demonstratedsigniIicantmoderate negativecorrelations (r~-0.5,p0.01)withCDSscore,whereas the severityoIdisease demonstrateda signiIicant moderate positive correlation(r0.479,p0.01)in the validationstudy.Boththe internalconsistencyoI CDS(Cronbach's0.9)andtest-retestreliability overa 2 weeks interval(t0.66,p~0.05)were Iound tobe satisIactory.Dataonsocio-demographiccharacteristicsoI caregivers andchildrenandothervariables relatedto caregiverpsychologicalhealthwere collectedusing a pre-tested,intervieweradministeredquestionnaire. AssociationoIcaregiverpsychologicalproblemswithleveloIcaregiverburden,selected caregiver/childcharacteristics,disease relatedandtreatmentrelatedvariables were testedusingchi-square test.Logistic regressionanalysis was carriedouttoidentiIythe predictors oIpsychological problemsamongcaregivers.TheIactorsthat demonstratedsigniIicantassociations (p0.05)with the presence oIpsychologicalproblems inthebivariate analysis were includedas independent variables in the logistic regressionanalysis.Alltheanalyses were done using SPSS(15.0)statistical soItware package.

A totaloI375principalcaregivers oIchildrenwithCPparticipatedinthe studyand11(2.9)caregiversdeclinedparticipationdue tolackoItime. ThecomparisonoIbasic demographic characteristics oI respondents andnon-respondents conIirmedthat there was nodiIIerence betweenthe twogroups. The characteristics oIthe sample revealedthat364 (97)oIthe principalcaregivers oIthe childrenwith CP were theirmothers.OIthe remaining,1.9weregrandmothers andIathers contributedas principal caregivers in1.1oIthe children.The majorityoI the sample were Sinhalese (n347,92.6), aged between30-39years (n161,42.9),livinginrural areas (n269,71.8)andhadlow socio-economicbackgrounds (n275,73.3).Approximately 60 oIthe caregivers (n224)hadcompletedpost-primary education,althoughonly6.7(n25)oI themwere employedatthe time oIstudy(Table 1). JOURNAL OFTHECOLLEGEOFCOMMUNITYPHYSICIANSOFSRILANKA10Table 1:The distributionoIbasic socio-demographic characteristics oIthe principalcaregiversBasic characteristics No.(n375) Age (incompletedyears)2020-3940-596033056340.881.316.81.1SectorUrbanRural&Estate10427127.772.3EthnicitySinhaleseMuslimOther34724492.66.41.0Average monthlyincome Rs.10,000.00~Rs.10,000.0026311270.129.9LevelofeducationPrimaryeducationandbelowPostprimaryeducationSecondaryeducationandabove622248916.559.722.8CurrentemploymentstatusEmployedNotemployed253506.793.3JOURNAL OFTHECOLLEGEOFCOMMUNITYPHYSICIANSOFSRILANKA11Table 2.ListoIvariables includedinlogistic regressionanalysisVariableCategoriesCodingLeveloIcaregiverburdenHigh1Low andModerate 0EducationalleveloIthe caregiverPrimary educationorbelow 1Above primaryeducation0Type oIIamilyExtendedNuclearIamily1Three generationIamily0Age oIthe child5yrs 15yrs 0Schoolingstatus oIthe childNotschooling1Schooling0Co-morbidities Present1Absent0NumberoIassociatedproblems ~6160NumberoItreatmenttypes 3types 11-2types 0Type oImainalternative caregiverOthercaregivers 1Spouse 0Care givingsupportas a copingmethodNo1Yes 0JOURNAL OFTHECOLLEGEOFCOMMUNITYPHYSICIANSOFSRILANKA12Table 3:Summarytable oIlogistic regressionanalysis Dependent variableIndependentvariablesAdjustedOdd RatioP value 95CI for Oddratio Lower Upper Psychological problemsLeveloIcaregiverburden 19.99 0.001 5.54 72.13EducationalleveloIthecaregiver3.65 0.001 1.78 7.48 Type oIIamily 1.60 0.07 0.96 2.67Age oIthe child 3.97 0.001 1.88 8.37 Schooling status oIchild 1.04 0.94 0.37 2.88 Co-morbidities 1.09 0.77 0.6 1 1.93 No.oI associatedproblems 1.62 0.32 0.62 4.24 No.oI treatmenttypes 2.04 0.02 1.13 3.67 Type oImainalternativecaregiver 0.41 0.28 0.08 2.08 Care giving support 1.82 0.04 1.00 3.31 The caregiverburden experiencedbythe principal caregivers oIchildrenwithCP was classiIiedinto3 levels:low,moderate andhighburden.The cutoII thresholds Iorthe diIIerentlevels were determined basedonthe meanandthe standarddeviationoIthetotalCDSscore:Lowburden (belowmean-1SD)30, Moderate burden(mean1SD)31-65,High burden(above mean1SD)66.Accordingtothiscategorization, 253(67.5)oIthe caregivers experienceda moderate leveloIburden,where as theproportionoIcaregivers whoexperiencedlow and highlevels oIburdenwere 17.1and15.4 respectively.FiItysixpercent(n210)oIcaregivers hadhigher totalscores IorGHQ,above the cutoIIthresholdIor psychologicaldisorders (95conIidence interval 51.0-61.0).Accordingtobivariate analysis,ahighleveloIcaregiverburdenwasstrongly associated withpresence oIpsychologicalproblemsamongthe principalcaregivers (p0.001).ThepresenceoIpsychologicalproblemswas also signiIicantlyassociatedwithloweducationalleveloI the caregiver(p0.01),beinginanextendedIamily (p0.05), youngerage oIthe child(p0.05),non-schoolingstates oIthe child(p0.05),presence oIco-morbidities (p0.001),havinga highernumberoI associatedproblems (p0.001)and more treatment types suchas drugtherapy,physiotherapy,speech therapyoroccupationaltherapy(p0.01),lackoI spousalsupport(p0.05)and notseekingsupport Iroma trustedpersontocope withthe care giving responsibilities(p0.001).The othervariablesincludedinbivariate analysis,i.e.the age,urban/rural residence,employmentstatus,income andsocial class oIthe caregiver,the sexoIthe child,numberoI siblings andbirthorder,the type oIcerebralpalsy, durationoIillness andaverage monthlyexpenditureIorthe treatments didnotshow a signiIicant associationwithcaregiverpsychologicalproblems(p~0.05). The variables whichdemonstrateda signiIicant associationwithpresence oIpsychologicalproblemsinthe bivariate analysis were thenincludedinalogistic regressionanalysis inordertoidentiIythevariables whichcanbe usedtopredictpsychological problems inthe caregivers (Tables 2&3).ThestrongestpredictorIorpresence oIpsychological problems was the leveloIcaregiverburdenOdd JOURNAL OFTHECOLLEGEOFCOMMUNITYPHYSICIANSOFSRILANKA13ratio(OR)19.99p0.001},indicatingthatthecaregivers withhighlevels oIcaregiverburdenhad approximately 20times higherriskoIhaving psychologicalproblems.The low educationallevel oIthe caregiver(OR3.65,p0.001)andthe younger age oIthe child (OR3.97,p0.001)were alsopredictive oIcaregiverpsychologicalproblems.Theotherpredictors includeduse oImore treatmenttypes(OR2.04,p0.05)andnotseekingcaregivingsupportIroma trustedperson(OR1.82,p0.05).

This study revealedthata considerable proportion(56)oIthe principalcaregivers oIchildren withCPexperience psychologicalproblems. The caregiverswhoare more likelytosuIIerIrompsychological problems were those havinga highleveloIcaregiver burden,low educationalstatus ora youngerchild withCP.Using more treatmenttypes andnotseeking care giving supportwere alsopredictive oIthepresenceoIpsychologicalproblemsinthese caregivers. Inthis study, the presence oIpsychologicalproblemsamongcaregivers was assessedusing the 30-item GeneralHealthQuestionnaire (GHQ-30).Itis themostwidelyusedscreeningtoolIorassessing psychiatric disorders worldwide andseveralstudiesoncaregiverpsychologicalhealthhavebeen conductedusing the GHQ toassess the presence oI 1 2 , 2 4psychol ogi cal probl ems . Most oIt he psychologicalproblems detected bythis instrument 25are anxietystatus anddepressive illnesses .Onedisadvantage oIGHQ highlightedinthe literature isthe ambiguityoIresponse category'nomore than usual',which makes itdiIIiculttodistinguish 26betweengood healthandchronic illness .Somebelieve thatthe GHQ mayunderestimate chronicillness as itis onlysensitive to changingsymptoms oI 27psychiatric disorders . AccordingtoGoldberg, thereis more likelihoodIorIalse positives withthe GHQthana clinicaldiagnosis;however,mostoIthese Ialsepositives are those experiencingtransientmood disorders thatwillbeneIitIroman opportunityto 28speaktoa doctor .The results oIthe presentstudydemonstratedthat 56oIcaregivers oIchildren withCP hadhigher totalscores IorGHQ,whichare above the cutoII thresholdIorpsychologicaldisorders.Previousstudies conductedinSriLanka revealedvarying prevalence rates Iorpsychologicalproblems inthegeneralpopulation, rangingIrom15-23among 21individuals attendinggeneralpractice .This clearly shows that,comparedtogeneralSriLankan population,caregivers oIchildrenwithcerebralpalsy appeartobe ata higherriskoIhavingpsychological problems.Ina review oIliterature,WilkinsonandBarczak Ioundthatthe prevalence oIpsychiatric disorders in generalpopulationgenerallyvarybetween10-20 27andmaybe evenhigheras 34incertaininstances . However,literature oncaregiveroutcomes showthat,the proportionoIcaregivers havingmental healthproblems is greaterincomparison.According 29toOyebode ,the researchonimpactoIcare giving suggests thatabout1/3to 1/2caregivers suIIer signiIicantpsychologicaldistress andalthough derivedIromcaregivers oIelderly,itcouldbe true Ior a widerrange oIindividuals whoprovide care Iorthedisabled. AstudyonBangladeshimothers oIchildrenwithCPusinga modiIicationoIGHQ demonstrated41.8 4mothers withpotentialpsychiatric morbidity.Intwo studies conductedinCanada,itwas Ioundthat25 29oIthe caregivers oIchildrenwithCP had 6,30reportedemotionalproblems ,althoughitwasbelievedthat,the greaterreportingoIpsychological problems amongcaregivers couldbe partially explainedbytheirrelativelyIrequentcontacts with6the healthsystems .Evenhigherrates oIparenting stress were observedbyothers,where 84oIthemothers oIchildrenwithdevelopmentaldisabilitiesinUK hadhighlevels oIstress inthe clinicalrange, 12where as Iathers scoredsubstantiallylower .TheseIindings are consistentwiththe results oIthe present studyanditconIirms that,irrespective oIculturaland environmentaldiIIerences,the negative impactoI care givingonpsychologicalhealthoIcaregivers is auniversalphenomenon. The distinctrelationshipbetweenleveloIcaregiver burdenandcaregiverpsychologicalproblems inthisstudyprovides useIulhints oncaregivers atriskoI psychiatricmorbidity.Thestrongassociation betweenCDSscore andGHQscore implies thatCDS can be usedas a predictoroIsubjects whowill emerge positive ina screeningIorpsychological JOURNAL OFTHECOLLEGEOFCOMMUNITYPHYSICIANSOFSRILANKA14disorders.CDS,atthe same time,willquantiIythedegree oIcaregiverburdenandprovide insightinto majorareas oIcaregiverconcerns,allowingtheservice providers toassess twoaspects oIcare giving using one instrument;i.e.'mediators oIcaregiver burden'and'potentialIornegative outcomes'. Dependingon the majorarea oIconcerncontributing toburden,measures can be developed tominimizethe degree oIburden,whichinturnwillbe helpIulin improvingpsychologicalhealthoIthe caregivers. There are a numberoIsimilarities anddiIIerences in the Iindings oIthis study,incomparisontothose oI otherstudies conducted worldwide.Althoughinthisstudycaregiver's educationalstatus emergedas apredictoroItheirpsychologicalhealth,otherstudies4,31provide inconclusive evidence on this association . The type oIIamilydid notshowanyassociationwith caregiverpsychologicalproblems inthe multivariate4analysis,inconcurrencewithotherstudies . Althoughone wouldassume thatthe contactwithawiderIamilycircle candecrease stress experiencedbycaregivers,the ultimate outcome is dependanton 29the state oIaIIairs withinthe Iamily .IIthis wider Iamilyis experiencingotherstressIulevents,thenthelikelihoodoIpsychologicaleIIects is more among the caregivers.Similartoourstudy,the age oIthe child was Ioundto be a predictoroIstress inmothers oIchildrenwithCP4inBangladesh.However,the highestpredictoroI stress accordingtothis studywas child behavioural problems.Althoughwe did notevaluate this aspectin ourstudy,the Iindings oIothers have supportedthis32,33conclusion .TheassociationoIseverityoI disabilitywithcaregiverpsychologicalproblems had beenassessedinotherstudies withcontrasting4,9,32Iindings .However,suchevidence shouldbeinterpretedwithcautionas the methods usedto ascertain severityoIdisability is notuniIormin thediIIerentstudies.SeekinghelpoIa trustedpersontolookaIterthe child in caregiver's absence was identiIiedas one oIthepredictors oIcaregiverpsychologicalproblems.ThisIindingis in accordance withthe results oIother 32,34,35studies .Although,a lowerincome levelandrural residence were Ioundtobe predictive oIcaregiver 4stress inothersettings ,boththese variables Iailed to show anyassociationwithcaregiverpsychological problems in ourstudy.The availabilityoIIree health services,wideraccessibilityoIIacilities suchashealthcare andtransporteveninruralareas and availabilityoIIinancialsupportschemes (through DepartmentoISocialServices)maypartiallyexplain the above diIIerences.While contributingtothe knowledge base on caregiverhealth,this studyhoweveris notwithout limitations.The studysample hadbeenselectedIrom the caregivers oIchildrenwithCPattendinga tertiary care setting.Itis likelytoresultinanover-representationoIchildrenwithmore severe Iorms oI disease andthe levels oIcaregiverburdenand prevalence rate oIpsychologicalproblems Ioundin this sample maynotbe representative oIthepopulationoIcaregivers ingeneral.Secondly,the cut oIIthresholds Iorlow,moderate andhighlevels oI caregiverburdenwere determinedonthe basis oIthestandarddeviations Iromthe meanburdenscore oI the sample.LackoIa controlgroupandinabilityto identiIya deIinite cutoIIlevelIorcaregiverburden are the otherlimitations inthis study.Thirdly,thedesignoIthe studyis limited byits cross sectional approach,becauseoIwhich,thetemporal relationshipbetweencaregiverburdenand psychologicalproblems couldnotbe ascertained. Finally,the widerconIidence intervalobservedin relationtothe odds oIhavinghighcaregiverburden as a predictoroIcaregiverpsychologicalproblemsindicates the needtoreplicate this studyina larger sample,inordertoobtaina more precise risk estimate.Conclusions:Thisstudyconcludesthat,a considerable proportionoIcaregivers oIchildren withcerebralpalsyexperiencepsychological problems,especiallyinassociationwith highlevelsoIcaregiverburden.AssessmentoIcaregiverburden is useIulinpredictingpsychologicalproblemsamongthese caregivers.A numberoIIactors areassociatedcaregiverpsychologicalproblems,which needs tobe consideredwhendevelopinglongterm care plans Iorchildrenwithcerebralpalsy.AcknowledgementsAuthorswishtothankDr.KalyanaRodrigo (ConsultantPsychiatrist)Iorgrantingpermissionto use the validatedSinhala versionoIthe General HealthQuestionnaire Iorthis study.JOURNAL OFTHECOLLEGEOFCOMMUNITYPHYSICIANSOFSRILANKA15Disclosure ofinterestThe authors declare nopotentialcompetingintereststothe research,authorshipand/orpublication oIthisarticle.ContributiontoauthorshipAllauthors contributedinconceptualizingand designingthe study.CJWplannedand implemented the data collection,data enteringandanalysis.All authors were involvedininterpretationoIdata and preparation/reviewoIthe manuscriptoIthis article.Details ofethicalapprovalEthicalclearance Iorthe studywas obtainedIromtheEthicalReviewCommittee oIthe FacultyoI Medicine,UniversityoIRuhuna.Funding: SelIIundedbythe authorsReference1. 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