www.rpped.com.br
REVISTA
PAULISTA
DE
PEDIATRIA
ORIGINAL
ARTICLE
Usefulness
of
the
WHOQOL-BREF
questionnaire
in
assessing
the
quality
of
life
of
parents
of
children
with
asthma
Cristian
Roncada
a,∗,
Caroline
Pieta
Dias
b,
Suelen
Goecks
a,
Simone
Elenise
Falcão
Cidade
a,
Paulo
Márcio
Condessa
Pitrez
aaPontifíciaUniversidadeCatólicadoRioGrandedoSul(PUCRS),PortoAlegre,RS,Brazil
bUniversidadeFederaldoRioGrandedoSul(UFRGS),PortoAlegre,RS,Brazil
Received31October2014;accepted23January2015 Availableonline27June2015
KEYWORDS Questionnaire; Qualityoflife; Asthma; Children; Adolescents; Caregivers
Abstract
Objective: Toevaluate the qualityof life(QOL) ofparentsofchildren with asthmaand to analyzetheinternalconsistencyofthegenericQOLtoolWorldHealthOrganizationQualityof Life,abbreviatedversion(WHOQOL-BREF).
Methods: WeevaluatedtheQOLofparentsofasthmaticandhealthychildrenagedbetween 8and16,usingthegenericWHOQOL-BREFquestionnaire.Wealsoevaluatedtheinternal con-sistencyusingCronbach’salpha(˛C),inordertodeterminewhetherthetoolhadgoodvalidity forthetargetaudience.
Results: Thestudyincluded162individualswithameanageof43.8±13.6years,ofwhich104 werefemale(64.2%)and128weremarried(79.0%).WhenassessingtheQOL,thegroupof par-entsofhealthychildrenhadhigherscoresthanthegroupofparentsofasthmaticchildreninthe fourareasevaluatedbythequestionnaire(Physical,PsychologicalHealth,SocialRelationships andEnvironment),indicatingabetterqualityoflife.Regardingtheinternalconsistencyofthe WHOQOL-BREF,valuesof˛Cwere0.86pointsforthegroupofparentsofasthmaticchildren, and0.88forthegroupofparentsofhealthychildren.
Conclusions: Parentsofchildrenwithasthmahaveimpairedqualityoflifeduetotheirchildren’s disease.Furthermore,theWHOQOL-BREF,evenasagenerictool,showedtobepracticaland efficienttoevaluatethequalityoflifeofparentsofasthmaticchildren.
© 2015 Sociedadede Pediatriade São Paulo. Publishedby Elsevier Editora Ltda. Allrights reserved.
DOIoforiginalarticle:http://dx.doi.org/10.1016/j.rpped.2015.01.007
∗Correspondingauthor.
E-mail:[email protected](C.Roncada).
PALAVRAS-CHAVE Questionário; Qualidadedevida; Asma;
Crianc¸as; Adolescentes; Cuidadores
ValordoempregodoquestionárioWHOQOL-BREFnaavaliac¸ãodaqualidadedevida
depaisdecrianc¸ascomasma
Resumo
Objetivo: Avaliaraqualidadedevida(QV)depaisdecrianc¸asasmáticaseanalisara consistên-ciainternadoinstrumentogenéricodequalidadedevidaWorldHealthOrganizationQualityof Life,versãoabreviada(WHOQOL-BREF).
Métodos: FoiavaliadaaQVdepaisdecrianc¸asasmáticasehígidasentreoito-16anos,pormeio doquestionáriogenéricoWHOQOL-BREF.Foiavaliadatambémaconsistênciainterna,pormeio doalfadeCronbach(˛C),paradeterminarseoinstrumentotemboavalidadeparaopúblico alvo.
Resultados: Participaramdoestudo162indivíduos,comidademédiade43,8±13,6anos,dos quais104eramdosexofeminino(64,2%)e128casados(79,0%).Naavaliac¸ãodonívelde quali-dadedevida,ogrupodepaisdecrianc¸assaudáveisapresentouescoresacimadogrupodepais deasmáticosnosquatrodomíniosdoinstrumento(físico,psicológico,socialemeioambiente) queindicammelhorqualidadedevida. Naanálisedeconsistênciainterna,oWHOQOL-BREF obtevevaloresde˛C=0,86pontosparaogrupodepaisdeasmáticose0,88paraogrupode paisdehígidos.
Conclusões: Paisdecrianc¸asasmáticasapresentamcomprometimentodaqualidadedevidaem func¸ãodadoenc¸adeseusfilhos.Alémdisso,oWHOQOL-BREF,mesmosendouminstrumento genérico,semostroupráticoeeficienteparaavaliaraqualidadedevidadepaisdecrianc¸as asmáticas.
© 2015SociedadedePediatria de SãoPaulo. Publicado porElsevier EditoraLtda. Todosos direitosreservados.
Introduction
Asthma is a chronic disease with high prevalence in childhood,1 which requires coordinated efforts between
children,familiesandhealthprofessionalsforitscontroland treatment.2The diseasetreatmentinvolves
pharmacologi-calandbehavioralrecommendationstopreventandcontrol itsexacerbations; however, asthma management is made difficultbythepatientsandtheircaregivers,whooftendo notadheretotheprescribedrecommendations.3Oneofthe
factorsfor poor adherencetotreatment is relatedtothe inadequateknowledgeofcaregiversonpreventive medica-tionsforthedisease.4Inturn,non-adherencetotreatment
results in lack of control, generating many complications inchildrenandtheircaregivers,resultinginadecreasein qualityoflifeforboth.3
Therefore, taking care of children with asthma has a significantimpactonthe familymembers.5 The burdenof
caringforachronicallyillchildisassociatedwithparents’ healthdeterioration,leadingtoadverse health outcomes, suchasemotional stressanddepression.6Allergicdiseases
consistofa varietyofdisordersthathave different symp-toms,leadingtoamultifacetedimpactonmanyaspectsof familylife.7 Inthissense,childrenwithasthmacansuffer
an impact onquestions related toeducation, sleep qual-ity, physical limitations, symptom control and behavioral ordevelopmentproblems.8Parentscanalsohaveproblems
maintainingnormalfamilyanddailylifefunctions,resulting inadecreaseinqualityoflife.9
Althoughseveraltoolshavebeendevelopedtomeasure theburdenortheimpactfeltbyparentswhencaringfor chil-drenwithchronicdiseases,nospecifictoolwasdeveloped
tomeasurethequalityoflifeofparentsthatprovidehealth caretochildrenwithasthmainBrazil.10 Theexistingtools
aregenericquestionnairesassessingthequalityoflifeinthe generalcontext,regardlessofhowthediseaseaffectsthe familycontext.11 Currently,themostoftenused
question-naireinstudiesinvolving qualityoflifeinchronicdiseases istheonebytheWorldHealthOrganization (WorldHealth OrganizationQualityofLife---WHOQOL),whichisusefulin epidemiologicalstudiesorclinicaltrials,aswellasto eval-uatetheeffectivenessoftreatmentsanddiseasecontrol.12
Becauseasthmaisadiseasewithhighprevalencein child-hood, which leads to complications for both children and familymembers,thepresentstudyhadtheprimary objec-tive ofevaluating thequalityof life ofparents caringfor childrenwithasthmafollowed atan outpatientclinic ofa referencecenterinsouthernBrazil.Asthereisnospecific toolforassessingthequalityoflifeofcaregiversofchildren withasthma,thesecondaryobjectivewastoevaluatethe internalconsistencyoftheWorldHealthOrganization Qual-ityofLife---shortversion(WHOQOL-BREF)toensurethatitis validforthestudygroup.
Method
Table1 Samplecharacterization.
Parentsofasthmaticchildren(n=54) Parentsofhealthychildren(n=108)
Age(mean±SD) 42.9±13.4 44.7±13.8
Female 38(70.3) 66(61.1%)
Married 41(75.9%) 87(80.5%)
Elementaryschool 39(72.2%) 72(66.6%)
Unemployed 6(11.1%) 5(4.6%)
SD,standarddeviation.
exclusioncriteria,theparentsinbothgroupscouldnothave adiagnosisofasthmaoranyotherchronicdiseasethatcould interferewiththestudyresults.Additionally,patientscould not have any other chronic diseases that might interfere withtheevaluationoftheWHOQOL-BREF.Fordataanalysis, thegroupsweredividedinto(Parentsofasthmaticchildren) and(Parentsof healthychildren). Forsample calculation, taking into account the population being followed at the reference center, assuming a 95% confidence level and a standard margin of error of 5%, it would be necessary to assess 48 parentsand/or caregivers of asthmaticchildren forthestudy.Inaddition,weadoptedthecriterionoftwo participantsinthehealthygroupforeachparticipantinthe asthmaticgroup.
To assess the qualityof life we used theWorld Health Organization WHOQOL-BREF tool,13 which consists of 26
questionswithstructuredresponsesonaLikertscaleoffive points.Thequestionnairewasself-administered,according totheperceptionofthelasttwoweeks.Ofthe26questions, twoassesstheperceptionofqualityoflifeandhealthofthe patient,andtheothers(24questions)comprisethephysical, psychological,socialandenvironmentdomains.Inaddition totheWHOQOL-BREF,ageneralquestionnairewasapplied tocharacterizethesample,consistingoftenquestions.
Thestudiedpsychometricpropertywastheinternal con-sistencybyCronbach’salpha(˛-C),14whichassesseswhether
a toolis capableof always measuringwhatis tobe mea-sured in the same way, producing an average correlation betweenquestionsandresponses.Thus,the˛Ccoefficient
iscalculatedfromthevarianceoftheindividualitemsand thevarianceofthesumbetweenitems,byverifyingwhether allofthemusethesamemeasuringscale.Valueswere con-sideredacceptablefor˛-Cscores>0.70and<0.95.
ThestudywasapprovedbytheInstitutionalReviewBoard ofthePontifíciaUniversidadeCatólicadoRioGrandedoSul (PUCRS)underthenumber11/05602.Moreover,all partici-pantsreceivedandsignedtheinformedconsentform(ICF), agreeingtoparticipateinthestudy.
StatisticalanalysiswasperformedusingIBMSPSS Statis-tics v.20 software (International Business Machines ---Statistical Productand Service Solutions,New York, USA). For descriptive analysis, categorical data were described as absolute and relative frequencies. The description of continuousvariableswasrepresentedbymeanandstandard deviation(SD).Associationsbetweentheoutcomevariables andbetweengroupsofschoolchildren(parentsof asthmat-icsand parents ofhealthy children)were evaluatedusing mixedlinearmodels.Forpurposesofpsychometricanalysis, Cronbach’salphatests(˛C)14andtheintraclasscorrelation
coefficient(ICC)wereapplied.15 Thesignificancelevelwas
setatp<0.05.
Results
The study included 162 subjects,54 parents of asthmatic and108 parents of healthy children, witha mean age of 43.8±13.6years.Ofthese,104werefemales(64.2%),111 withpredominantlyelementaryeducation(68.5%),and128 with a current marital status of ‘married’ (79.0%). The comparisonofthegeneralcharacteristicsofparentsof asth-maticsandparentsofhealthychildrenisshowninTable1.
Whencomparingthequalityoflifelevelbetweenthetwo groups(Table2andFig.1),thegroupofparentsofhealthy childrenhadhigherscoresthanthegroupofparentsof asth-matic children in the four domains of the questionnaire, aswell as for the health perception and thetotal score. Therewerenodifferencesbetweenthegroupsonlyforthe questionaboutthequalityoflifeperception.
Forinternalconsistency,the˛Cwasappliedtoboththe
totalscore(26items)andthescoreperitem(Table3).In theanalysisofthetotalscore,thetoolobtainedavalueof
˛C=0.86pointsfor thegroupofparentsof asthmaticsand
0.88forthegroupofparentsofhealthychildren.These val-uesshowastronginternalconsistencybothbetweenitems andinthetotal,asscores<0.70areconsideredhighly rel-evant.Forcorrelation purposes, theintraclass correlation coefficient(ICC)wasapplied,yieldingvaluesof0.85points (p<0.001)for thegroup ofparents ofasthmaticsand0.88 (p<0.001)forthegroupofparentsofhealthychildren,with a95%confidenceinterval(95%CI:0.79---0.90and0.87---0.89, respectively).
Discussion
The assessment of qualityof life hastaken ona keyrole inthe clinical area,regarding the individualor collective perceptionofpatientswithcertainchronicdiseases,which theycanmaintainsomewhatundercontroldueto therapeu-ticadvances.The factthatpatientsbenefitfromsurvival, sometimesforlong periods,doesnotmean‘‘livingwell’’, asthereareoftenlimitations,withlossesinseveral activ-ities of daily living. However, this fact goes far beyond patientlimitations,asinthecaseofchildrendiagnosedwith asthma,inwhichparentsorguardiansendupbeingdirectly affectedbythedisease.
Table2 Comparisonoflevelsofqualityoflifebetweengroupsofparentsofasthmaticandhealthychildrenusingthe WHOQOL-BREFquestionnaire,assessedinPortoAlegre,RS,inthe2013/2014period.Datashownasmean±SD.
Parentsofasthmaticchildren(n=54) Parentsofhealthychildren(n=108) DF p-value
Mean SD Mean SD
Domain1---Physical 63.03 ±15.35 69.64 ±12.10 −6.61 0.005a
Domain2---Psychological 63.66 ±13.35 69.56 ±9.45 −5.90 0.005a
Domain3---Social 63.74 ±15.87 76.39 ±12.76 −12.65 <0.001a
Domain4---Environmental 55.38 ±13.20 64.47 ±9.29 −9.08 <0.001a
Perceptionofqualityoflife 69.91 ±13.19 73.15 ±14.78 −3.24 0.100
Perceptionofhealth 62.50 ±19.87 70.60 ±17.37 −8.10 0.007a
Totalscoreofdomains 61.68 ±10.64 70.6s3 ±8.62 −8.95 <0.001a
DF,differencebetweengroups;SD,standarddeviation.
healthychildren’scaregivers.UsingtheWHOQOL-BREFtool, one can observe that in the four central domains of the study (physical, psychological, social and environmental), caregiversofasthmaticchildrenshowedsignificantlylower values,inadditiontotheirownperceptionofhealth,when comparedwith the group of parents of healthy children. Furthermore, with the secondary objective of evaluating theinternalconsistency,thetoolshowedvaluesabovethe meanofqualityof lifetools,11 demonstratingthat it
con-ciselymeasures the answers. Using the same instrument, Crespoetal.16investigatedtheimpactofthediseaseon97
caregiversofchildrenwithasthma.Theauthorsconcluded thatthefamilyfactorsarekeycomponentsto understand-ingthequalityoflifenotonlyofchildrenwiththedisease butalsooftheircaregivers.Amongthefamilyfactors, fam-ily resources were analyzed (material and assistance), as wellasfamilychallenges(futureperspectives).Suchfactors are potentially modifiable, and can be included in prac-ticalinterventions aimingat improving the qualityof life of family members.17 The family resources were
identi-fiedasthepositiveaspects ofthe family,thatis, parents and children perceiving a consistent family environment,
facilitatingcommunication andtheexpressionof thoughts andfeelings. Familychallengesrefer totheburden expe-rienced by the caregiver, regarding the negative impact thediseasecanbringtothefamilyenvironment.18,19 These
two factors are usually affected, because caregivers can rarely maintain a stableprofessional life, asthey usually need to meet the additional demands generated by the disease.20
Recently,Silvaetal.21publishedastudyassociatingthe
high levels of care burden to impaired quality of life of parents of asthmatic children. A total of 180 parents of asthmaticchildren(aged8---18years)wereevaluated,who reported their experience regarding care of the disease, theuseofpositivereformulationincopingandtheirquality oflife.Theauthorssuggestthatpsychologicalinterventions focused on the recognition and appreciation of care, together with the positive revaluation of the stressful situation, can support the coping strategies and improve theparents’qualityoflife.However,dissimilarlyfromthe present study, significant values were only found for thesocialdomain.Accordingtoother studies,22---25 parents
of children with chronic diseases, such as asthma, keep
Physical Social
100
90
80
70
60
50
40
30
20
10
0
Psychological Environment QoL
perception
Perception of health
Score between domains
**
p<0.001*
p<0.050*
*
*
*
**
**
Quality of life (QoL)
Parents of healthy children Parents of asthmatics
Table3 Assessment ofinternal consistency ofthe items (WHOQOL-BREF questionnairequestions) using Cronbach’s alpha coefficient(˛C)appliedtogroupsofparentsofasthmaticandparentsofhealthychildren.
˛Casthmatics ˛Chealthy
1.Howwouldyourateyourqualityoflife? 0.85 0.88
2.Howsatisfiedareyouwithyourhealth? 0.85 0.87
3.Towhatextentdoyoufeelthatphysicalpainpreventsyou fromdoingwhatyouneedtodo?
0.85 0.88
4.Howmuchdoyouneedmedicaltreatmenttofunctionin yourdailylife?
0.86 0.88
5.Howmuchdoyouenjoylife? 0.85 0.88
6.Towhatextentdoyoufeelyourlifeto bemeaningful?
0.85 0.88
7.Howwellareyouabletoconcentrate? 0.85 0.88
8.Howsafedoyoufeelinyourdailylife? 0.85 0.87
9.Howhealthyisyourphysicalenvironment(climate,noise, pollution,appeals)?
0.86 0.88
10.Doyouhaveenoughenergyforeverydaylife? 0.85 0.87
11.Areyouabletoacceptyourphysicalappearance? 0.86 0.87
12.Doyouhaveyouenoughmoneytomeetyourneeds? 0.85 0.88
13.Howavailabletoyouistheinformationthatyouneedin yourday-to-daylife?
0.85 0.88
14.Towhatextentdoyouhavetheopportunityforleisure activities?
0.84 0.88
15.Howwellareyouabletogetaround? 0.85 0.87
16.Howsatisfiedareyouwithyoursleep? 0.84 0.88
17.Howsatisfiedareyouwithyourabilitytoperformyour dailylivingactivities?
0.84 0.87
18.Howsatisfiedareyouwithyourcapacityforwork? 0.85 0.87
19.Howsatisfiedareyouwithyourself? 0.84 0.87
20.Howsatisfiedareyouwithyourpersonalrelationships? 0.84 0.87
21.Howsatisfiedareyouwithyoursexlife? 0.85 0.87
22.Howsatisfiedareyouwiththesupportyougetfromyour friends?
0.85 0.88
23.Howsatisfiedareyouwiththeconditionsofyourliving place?
0.85 0.87
24.Howsatisfiedareyouwithyouraccesstohealthservices? 0.85 0.88
25.Howsatisfiedareyouwithyourtransportation? 0.85 0.88
26.Howoftendoyouhavenegativefeelingssuchasbad mood,anxiety,anddepression?
0.84 0.88
˛C,Cronbach’salpha;Asthmatics,Groupofparentsofchildrenwithasthma;Healthychildren,Groupofparentsofhealthychildren.
closersocialrelationships,usedasabasis forsupportand skillstocopewiththedisease.
Gauetal.26 developedastudytovalidatethe
WHOQOL-BREFquestionnaireappliedto229 caregiversofasthmatic childreninTaiwan.Inthisstudy,thevalueofCronbach’s˛
rangedfrom0.64to0.84,valuesthatarelowerthanthose foundin thepresentstudy (0.84to0.86).As aresult,the authorsdemonstratedthatphysicalhealthandpsychological healtharethetwoareasthathaveanimpactonthequality oflifeofthispopulation.26Inthepresentstudy,thevalues
weredifferent for the fourdomains(physical, emotional, socialandenvironmental),inadditiontotheperceptionof healthcategory.Theauthorsstatethatthephysicalstrength levelsarelowduetosleepinterruption,lossofenergyand somaticcomplaints,influencingnotonlythephysicalhealth perception, but also the negative feelings that, in turn, directlyinterferewiththeperceptionofthepsychological
domain.Additionally,environmentalfactors,including pol-lution,noise,trafficandweather,alsoaffectthequalityof lifeof mothersand theirchildren in Taiwan. Finally, they concludedthatthetoolusedinthestudywasvalidand reli-ableforassessingthequalityoflifeofcaregiversofchildren withasthma.26
Moreiraetal.27 comparedthequalityof lifeofparents
exception of asthma, asthe valuesshowed low variation inqualityoflifescoresrelatedtothedisease.Theauthors concludedthe study by reinforcingthat pediatricians not only should evaluate children with chronic diseases, but alsoevaluate or refer to follow-up the parents with psy-chosocial difficulties that might interfere withthe health andwell-beingoftheirchildren.
Asthemainlimitationofthestudy,wepointoutthelack ofaspecifictooltoassessthequalityoflifeofparentsof childrenwithasthmainPortuguese(BrazilianPortuguese). Since2011,thereisaspecialtooltoassessthequalityoflife ofcaregiversof childrenwithasthma,called Cuestionario de Impacto Familiar del Asma Bronquial Infantil (IFABI-R).28 The IFABI-R questionnaire consists of three domains
(functional,emotionalandsocio-occupational)andhasgood psychometricanalysis,butitisappliedtotheSpanishpublic. InordertoapplyittoBraziliancaregivers, priorlinguistic and cultural validation would be required. It is notewor-thy that, even if the WHOQOL-BREF has been shown to havehighinternalconsistency,theitemsarenotspecificfor asthma.
Thisstudyshowedthatasthmacancompromisethe qual-ity of life of parents of asthmatic children, who end up sufferingtheimpactofthediseasemorbidity.Regardingthe tool used to assess quality of life, it is possible to state thatitcanbesafely andeffectivelyappliedtoparentsof childrenwithasthma,aslongasitsinternalconsistencyis analyzed.
Funding
Conselho Nacional de Desenvolvimento Científico e Tec-nológico(CNPq),E\ by way of a starting grant.
Conflicts
of
interest
Theauthorsdeclarenoconflictsofinterest.
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