Family resources study: part 1: family resources, family function and caregiver strain in childhood cancer

Panganiban-Corales, Medina

Description

Severe illness can disrupt family life, cause family dysfunction, strain resources, and cause caregiver burden. The family's ability to cope with crises depends on their resources. This study sought to assess families of children with cancer in terms of family function-dysfunction, family caregiver strain and the adequacy of family resources using a new family resources assessment instrument. Methods This is a cross-sectional study involving 90 Filipino family caregivers of children undergoing cancer treatment. This used a self-administered questionnaire composed of a new 12-item family resources questionnaire (SCREEM-RES) based on the SCREEM method of analysis, Family APGAR to assess family function-dysfunction; and Modified Caregiver Strain Index to assess strain in caring for the patient. Results More than half of families were either moderately or severely dysfunctional. Close to half of caregivers were either predisposed to strain or experienced severe strain, majority disclosed that their families have inadequate economic resources; many also report inaccessibility to medical help in the community and insufficient educational resources to understand and care for their patients. Resources most often reported as adequate were: family's faith and religion; help from within the family and from health providers. SCREEM-RES showed to be reliable with Cronbach's alpha of 0.80. There is good inter-item correlation between items in each domain: 0.24-0.70. Internal consistency reliability for each domain was also good: 0.40-0.92. Using 2-point scoring system, Cronbach's alpha were slightly lower: full scale (0.70) and for each domain 0.26-.82. Results showed evidence of association between family resources and family function based on the family APGAR but none between family resources and caregiver strain and between family function and caregiver strain. Conclusion Many Filipino families of children with cancer have inadequate resources, especially economic; and are moderately or severely dysfunctional. Many caregivers are predisposed to caregiver strain or are already experiencing severe strain. To provide appropriate care for these families, physicians should regularly assess family function, resources and strain experienced by caregivers. The SCREEM-RES questionnaire used in this study is a helpful and reliable instrument to assess adequacy of family resources.

Informations

• Publié par: biomed
• Publié le: 01 janvier 2011
• Nombre de lectures: 585
• Langue: English

Extrait

Panganiban-CoralesandMedina
AsiaPacificFamilyMedicine
2011,
10
:14
http://www.apfmj.com/content/10/1/14

RESEARCH

OpenAccess

Familyresourcesstudy:part1:familyresources,
familyfunctionandcaregiverstrainin
childhoodcancer
AvegeilleTPanganiban-Corales
*
andManuelFMedinaJr

Abstract
Background:
Severeillnesscandisruptfamilylife,causefamilydysfunction,strainresources,andcausecaregiver
burden.Thefamily
’
sabilitytocopewithcrisesdependsontheirresources.Thisstudysoughttoassessfamiliesof
childrenwithcancerintermsoffamilyfunction-dysfunction,familycaregiverstrainandtheadequacyoffamily
resourcesusinganewfamilyresourcesassessmentinstrument.
Methods:
Thisisacross-sectionalstudyinvolving90Filipinofamilycaregiversofchildrenundergoingcancer
treatment.Thisusedaself-administeredquestionnairecomposedofanew12-itemfamilyresourcesquestionnaire
(SCREEM-RES)basedontheSCREEMmethodofanalysis,FamilyAPGARtoassessfamilyfunction-dysfunction;and
ModifiedCaregiverStrainIndextoassessstrainincaringforthepatient.
Results:
Morethanhalfoffamilieswereeithermoderatelyorseverelydysfunctional.Closetohalfofcaregivers
wereeitherpredisposedtostrainorexperiencedseverestrain,majoritydisclosedthattheirfamilieshave
inadequateeconomicresources;manyalsoreportinaccessibilitytomedicalhelpinthecommunityandinsufficient
educationalresourcestounderstandandcarefortheirpatients.Resourcesmostoftenreportedasadequatewere:
family
’
sfaithandreligion;helpfromwithinthefamilyandfromhealthproviders.SCREEM-RESshowedtobe
reliablewithCronbach
’
salphaof0.80.Thereisgoodinter-itemcorrelationbetweenitemsineachdomain:0.24-
0.70.Internalconsistencyreliabilityforeachdomainwasalsogood:0.40-0.92.Using2-pointscoringsystem,
Cronbach
’
salphawereslightlylower:fullscale(0.70)andforeachdomain0.26-.82.Resultsshowedevidenceof
associationbetweenfamilyresourcesandfamilyfunctionbasedonthefamilyAPGARbutnonebetweenfamily
resourcesandcaregiverstrainandbetweenfamilyfunctionandcaregiverstrain.
Conclusion:
ManyFilipinofamiliesofchildrenwithcancerhaveinadequateresources,especiallyeconomic;and
aremoderatelyorseverelydysfunctional.Manycaregiversarepredisposedtocaregiverstrainorarealready
experiencingseverestrain.Toprovideappropriatecareforthesefamilies,physiciansshouldregularlyassessfamily
function,resourcesandstrainexperiencedbycaregivers.TheSCREEM-RESquestionnaireusedinthisstudyisa
helpfulandreliableinstrumenttoassessadequacyoffamilyresources.
Keywords:
familyresources,caregiverstrain,caregiverstress,caregiverburden,familyfunction,family
’
scoping
mechanism,familyresourcesassessment

*Correspondence:[e-mail]
DepartmentofFamilyandCommunityMedicineUniversityofthe
Philippines-PhilippineGeneralHospitalTaftAvenue,Ermita,Manila
Philippines

©2011Panganiban-CoralesandMedina;licenseeBioMedCentralLtd.ThisisanOpenAccessarticledistributedunderthetermsofthe
CreativeCommonsAttributionLicense(http://creativecommons.org/licenses/by/2.0),whichpermitsunrestricteduse,distribution,and
reproductioninanymedium,providedtheoriginalworkisproperlycited.

Panganiban-CoralesandMedina
AsiaPacificFamilyMedicine
2011,
10
:14
http://www.apfmj.com/content/10/1/14

Background
Approximately144per1millionFilipinochildrenand
adolescentsarediagnosedwithcancereachyearin
Philippines[1].Thediagnosisofcancerinachildcan
sendafamilyintocrisis.Itnotonlydisruptsthechild
’
s
lifebutthefamily
’
slifeaswell-asfamilymemberstryto
adjusttheirroles,interactivepatternsandrelationships
insideandoutsideofthefamily.Thecrisisdrastically
changes
‘
normal
’
routinesoffamilyinteractionsasthe
familyattemptstocope.Thefamily
’
sabilitytocopewith
amedicalcrisissuchascancerinachilddependson
theirresources.InthePhilippines,manyfamiliesmay
lackfinancialandotherresourcestodealwithchildhood
cancer.
AccordingtoBarakat,MarmerandSchwartz[2],family
functioniscentraltothequalityoflifeinchildrenwhile
undertreatmentforcancer;itmaypromotepositiveout-
comesforthem.Moreover;
“
...familiesofchildrenand
adolescentswithcancerratethemselvesaslesscohesive
andmoreconflictedthandofamiliesofhealthychildren
”
[3].Familyfunctionmeasurestheextenttowhicha
familyworksasaunit;itdenotesthefamily
’
sabilityto
copeandadjusttodifferentsituations.Screeningfor
familyfunctioningisimportanttoidentifystrengthsthat
canserveasbuffersincopingwithstressors[4].Thiscan
bedonewiththeuseoffamilyAPGARoriginally
designedbySmilkstein[5].AFilipinoversionofthetool
hasbeenusedandvalidatedinthePhilippinessince
1992;itsresultsreflectafamilymember
’
sperceptionof
andsatisfactionwiththefunctionalstateofhisfamily.It
isoneofthemostcommontoolsusedbyfamilyphysi-
ciansforassessingfamilyfunctionintheclinicalsetting.
Childhoodcancercausesseveredisruptionsinfamilylife
andresultsinmanystressorsofvaryingduration,certainty
andimpact[6-9].Theeffectsofchildhoodcancerare
oftenfeltbytheentirefamily,especiallythefamilycare-
giver.Moreover,becausechildrenarenotlegallycompe-
tent,mostdecisionsaboutcanceranditsmanagementare
madebytheadultfamilymembersandcaregivers.Child-
hoodcancercancausesignificantpsychosocialdistresson
adultfamilymembersandcaregivers.
Manneet.al.[10]foundthatmoderatetoseveredepres-
sivesymptomsinparentsdidnotimprove6monthsafter
diagnosis.Sloperet.al.[11]alsofoundthatpsychological
distressinparentsremainedhighat18monthsafter
diagnosis.
Caregiverstrainmeasuresstressorburdenduetothe
physical,personal,emotionalandfinancialstressincurred
byacaregiverasaresultof,orinrelationto,his/hercar-
egivingrole/s.InthestudydonebyBeckandLopes
amongcaregiversofchildrenwithcancerin2007,78%of
thecaregivershad
“
caregiverrolestrain
”
and100%pre-
sentedriskfor
“
caregiverrolestrain
”
[12].Itistherefore

Page2of11

importanttoidentifystrainamongcaregiverstoprevent
adversepsychosocialproblemsonthefamilycaregiver.
AccordingtoDr.GabrielSmilkstein[5,13]thefamily
’
s
abilitytoadapttoorcopewithcrisisdependsontheir
resources.InthePhilippines,apopularmethodusedby
familyphysicianstoassessfamilyresourcesisthe
SCREEMMethodofAnalysiswhichwasdevelopedby
Smilkstein[5]todeterminefamily
’
scapacitytoparticipate
intheprovisionofhealthcareortocopeintimesofcrisis.
Useofthistoolresultsinanarrativedescriptionofthe
social,cultural,religious,economic,educationalandmedi-
calresources,forwhichitsacronymstandsfor,asitrelates
topossiblesourceofhelporhindrancetotheprovisionof
careforpatients.
Atpresent,thereisaneedforreliableandvalidFilipino
instrumentstoassesstheadequacyoffamilyresources.
Thespecificobjectivesofthestudywere:1)todetermine
familyfunctionusingtheFilipinoFamilyAPGAR;2)to
measurethefamilycaregiverstrainutilizingtheModified
CaregiverStrainIndex;3)toevaluatefamilyresources
usinganewquestionnairebasedonthesixdomainsofthe
SCREEMmethodofanalysis-social,cultural,religious,
economic,educationandmedical;3)todeterminethe
relationshipbetweenfamilyresources,familyfunctionand
caregiverstrain;and4)todeterminethereliabilityofthe
newfamilyresourcesquestionnaireintermsofinternal
consistencyamongpediatriccancerpatients.
OperationalDefinitions
•
familyresources-meansthatcanbeusedbythe
familytocopewithdifficultsituations;includethe
followingresources:
socialresources-strongsocialsupportnetwork
whichmayincludespouse,children,parents,sib-
lings,neighbors,co-workersandothers
culturalresources-culturalvalueswhichcaninflu-
enceanindividualorfamily
’
sabilitytocareforthe
sickandcopewithstresse.g.optimism,familial-
ism,approachvsavoidancestyle,etc.
religiousresources-spiritualbeliefs,practices
andsupportservices
economicresources-family
’
sincomeand
savings
educationalresources-levelofformaleducation
attainedbyanindividualwhichallowshimto
understandthepatient
’
sconditionandgivehim
appropriatecare
medicalresources-acessibilitytomedicalfacil-
itiesandadequacyofhelpfromhealthcare
providers
Theseresourceswillbemeasuredbytheuseof
SCREEM-RES,anewlydevelopedfamilyresources
questionnairedevelopedbythestaffofthesectionof

Panganiban-CoralesandMedina
AsiaPacificFamilyMedicine
2011,
10
:14
http://www.apfmj.com/content/10/1/14

SupportivePalliativeHospiceMedicineoftheUni-
versityofthePhilippines-PhilippineGeneral
Hospital.
•
caregiverstrain-physical,personal,emotionaland
financialstressincurredbyacaregiverasaresultof,or
inrelationto,his/hercaregivingrole/s.Thiswillbe
measuredbytheModifiedCaregiverstrainindex
•
familyfunction-measurestheextenttowhicha
familyworksasaunit;itdenotesthefamily
’
sabilityto
copeandadjusttodifferentsituationsbasedon5com-
ponents:adaptation,partnership,growth,affectionand
resolve;theFilipinoFamilyAPGARwillbeusedto
measurethis
Methods
SampleandDataCollection
Thisisacrosssectionalstudyinvolvinganon-randomized
conveniencesampleof90adultfamilycaregiversofchil-
drenwithcancerwhowerebeingseenatthepediatric
cancerclinicofat