b

Being a Caregiver for patients with

End-Stage Renal Disease in Singapore:
An exploratory qualitative study

Chan Kai Jun, Cindy

PI: Ms Lee Ching Siang Cindy (ALCNS)
Co-PI: Ms Chen Hui-Chen (ALCNS)
Site PI: NE Hazel Lim (NUH)
 Overview
Background
Literature Review
Conceptual Framework
Study Design
Data Analysis
Results
Contributions to existing literature
Q&A
 Background
No.ofpatientsondialysis IncidenceofRenalTransplantation
Responsible for the patient
during the course of disease
Who are Perform ADLs
Why Caregivers?
Caregivers for Related by blood or
patients with marriage to the patient
ESRD? Being a Exclude those professionals
Caregiver or paid
Chronic illness with
acute phase
for patients (Bastawrous,2013)
(Ford,Goode,Barrett,Harrell,&Haley,1997)

Unpredictability with ESRD (Harris,1998)

Hospital admissions due

to caregiving issues Why Globally >2 million; steep
ESRD? Growth Rate
(Daneker, Kimmel, Ranich, & Peterson, 2001)
(Junco, 2003)
Singapore
(Eggers,2011)
(NationalRegistryofDiseaseOffice,2014)
 Keywords:
End-Stage Renal Disease, End-Stage
Step1 Kidney Failure, Hemodialysis, Peritoneal
Dialysis, Caregiver, Spouse, Family,
Caregiver Stress, Caregiver Strain,
Caregiver Burden and Support

Step2

Step3

PRISMA
 Literature Review
Dyad RiskFactorsofCaregiving Copingand
Relationship HealthOutcomesofStress
Support
Morenegativethanpatient
Transference Positive
Interdependence CaregivingStress conceptualizations
Anythingrelatedtotheexperienceofcaregivingthat
Strongerpersonality,
resultsinanxiety,discomfort,emotionaltensionand
Bringfamilycloser
difficultyinadjustment
Givenewmeaningto
MoreinFemale,Spouse,lowerSES,lowereducational
relationship
Patient CaregiversofPDpatients

Caregiver
(Ashbyetal.,2005)
(Bermon &Bezkor,2010)
(Hoffman&Mitchell,1998)
CaregivingBurden CopingStrategies
Religion,Humor,
ObjectiveBurden Longhours,highdependency
Hopingfortransplant
SubjectiveBurden roleconfinement,carerecipientas
core
Socialsupport
CaregivingStrains Mediateoutcomesof
stress
2 rolestrains Financial/Unemployment,difficultyin
Differfromcountryto
familyfunctioning,Familyconflict
countryandcultureto
Intrapsychicstrains SocialIsolation,failedbounden
culture
duty
(Belascoet.al.,2006)
(Belasco&Sesso,2002) (Aghakhani etal.,2014)
(Fanetal.,2008) (Luk,2002)
(Pruchno etal.,2009) (PelletierHibbert &Sohi,2001)
(Ziegert &Fridlund,2001) (Whiteetal.,2004)
 Research Gap
Commonly focused in other areas (e.g. Cancer,
Alzheimer's Disease)
Lack of qualitative research
Quantitative ones focus on outcomes of
caregiving (e.g. depression/burden of
caregiving)
Western countries
Conceptual Framework
The Stress Process Model

(Pearlin etal.,1990)
 Conceptual Framework
Two-factor model of caregiving appraisal and
psychological well-being

(Lawtonetal.,1991)
 Study Design
What? Aim: Explore the caregiving experience of caregiver
of adult patients with ESRD in Singapore

Research Questions:
What is the caregiving experience of
caregivers for patients with ESRD?
What are the psychosocial problems and
support needs of caregiver for patients with
ESRD?
 Study Design
StudyDesign Qualitative Explorative approach
(How?) Semi-structured face-to-face interview

Setting Inpatient Dialysis Centre / Ward 55 / Renal Centre / NUH

(Where?) Satellite Dialysis Centre (Alexis)

Sample Purposive Sampling

(Who?) 16 caregivers (till data saturation)
Inclusion Criteria
Caregiver is 21 years and above
Patient is 21 years and above
Understand English or Mandarin
Main person responsible for the patient
Has provided regular care for the patient for at least 1 month
Exclusion Criteria
Patients, themselves, who are their own caregivers
Domestic helpers
 Interview Guide

Difficultiesin
Caregiving
Howitis
formulated?
Support Disruptionsto Reviewbyexpert,
Needs Life
Literaturereview,
Conceptual
Dimensions
Framework
Happiness/Sa
Feelings
1PilotInterview
tisfaction

Worriesfor
future
 Data Analysis
Thematic Analysis

Familiarizing Definingand
Generating Searching Reviewing Producing
yourself naming
initialcodes forthemes Themes theReport
withdata themes

(Braun&Clarke,2006)
 Socio-Demographic
Variables N % Variables N %
DialysisModalityofpatient Occupation
Hemodialysis(HD) 8 50.0 Fulltime/Parttime employment 10 62.5
PeritonealDialysis(PD) 8 50.0 Retired/Housewife 4 25.0
Unemployed 2 12.5
Gender
Male 5 31.3 FamilyIncomeLevel
Female 11 68.8 <$1000 4 26.7
$1000$2000 6 40.0
Ethnicity 2 13.3
$2000$3000
Chinese 12 75.0
$3000$4000 2 13.3
Malay 2 12.5
>$4000 1 6.7
Indian 2 12.5
PeriodofCaregiving
Relationship withPatient 3 18.8
<1year
Spouse 7 43.8
15years 3 18.8
Children 7 43.8
510years 7 43.6
Parent 2 12.5
>10years 3 18.8
EducationLevel
3 18.8
No. ofCaregivinghoursperweek
Illiterate 4 25.0
<20hours
Primary/Secondary/ITE 4 25.0
2050hours 5 31.3
Polytechnic 6 37.5
>50hours 7 43.8
University/College/Masters 3 18.8

MaritalStatus Variables Min Max Mean SD

Single 5 31.3
Married 11 68.8 Age 21 80 47.3 18.4
 Results
Theme1:IntrusionofIllness

AlteredFamily AffectedEmotionsof Triggerofvirtuefor

Relationshipand caregiver survival
Situation

AffectedFinancial
PsychosocialStrainsin Intrusionof status
caregiver
Illness
 Results
Theme1:IntrusionofIllness
1.1Alteredfamilyrelationshipandsituation

Wewillhavetostrugglebetweenwehavetostrugglebetweencomingfromwork
tohere,youhavetostrugglewiththefactthatheisherealoneandhewantsmore
attention,morepeopletospendtimewithhim.Sootherthanifyoudontcome
duringlunchtime,hewillsaythatyouhavesomething{Slouchesandsigh}ya So
youhavetocomeduringlunchtimeandeveningtime,andthenbythetimeyougo
backhome,maybeabout8plus9plus,youhavetohaveyourdinner,shower,andby
thetimeyoureallygetdowntorest,youhavetosleepbecauseitsthenextday
already.Itisreallythenextdayandyouneedtochiong (strive)again.
(MC16PA,English)

BecauseeverythingIdoIhavetofactorhimin.Firstpriorityishim.Notevento
theextentofmytwokid,youknow,theythey they willthinkthattheyfelt
neglected.Itseverythingpapa,papa.
(FS03HA,English)
 Results
Theme1:IntrusionofIllness
1.2PsychosocialStrainsincaregiver

Thereissomegrievances la,grievancesbutnochoicela,thisisnotwhatshewants,
Ialsounderstandthatwecannotblameher,nochoicelor.(FC15PA,Mandarin)

Becausewhenyoutakecare(ofthepatient),itsnotaoneortwoyearthing,but
itsforever. (FC01HA,Mandarin)

1.3Triggerofvirtualforsurvival

wedidswearinourmarriage,weswearthatregardlessofillnesswewouldtakecare
ofeachother. (MS14HA,Mandarin)

CaregivinglikeIsayitsnot.ItsnotaburdenoranythingBecausetheyaretheones
whogavebirthtous,right.{laughter}ya. (FC02PA,English)
 Results
Theme2:ImmersioninIllness

Transformed
ComingtoTerm
IndividualLife
withDisruption

Immersion Becomingan
Expert
inillness
 Results
Theme2:ImmersioninIllness
2.1TransformedindividualLife

Anytimethathecomeback,10oclock11oclockmidnightwehavetosendhimto
thehospital.Youhavetogetdressedupandgo.Youdontdillydally.Notimefor
yourmealsallthesethingsEverytimehecomebackwehavetostandbyYou
cannothaveyourhabitlikeluxurysittingdownwatchingTVallthesethings.You
muststandby. (FS06HA,English)

2.2Becominganexpert

Igothroughthiser whenmymumhaskidneyfailureIdidntknowwhatisdialysis
atthattime,Idontknowthereistwooptions,waterdialysisorblooddialysis.Only
whenmymumhaskidneyfailurethenIknowthepatientsfeelsandwhattheyare
goingthrough.DoingdialysisisnotveryeasyitsverydifficultandyeahIlearna
lotalongtheway.
(FC12PC,English)
 Results
Theme3:EmbracingPositiveConceptualization

AwarenessofNew Renewedsenseof
Perspective Relationship

EmbracingPositive
Conceptualizations
Choosing Attitudeis
Gratitude Everything
 Results
Theme3:EmbracingPositiveConceptualization
3.1Choosinggratitude

Ifwearenottakingcareofhim,maybehewouldhavealreadybeengonemany
many yearsago,sohewouldhavealreadymissedoutalotofthingslikeMarinaBay
Sands,allthesenewbuildingthatarenowinSingaporewhichwhenhegrowsold.
(MC16PA,English)

3.2Renewedsenseofrelationship

Sochangeisthatweactuallyinawayislikeblessingindisguisela.Itmakes
moreofusinveryclose,gettogetherandallthat.Ya,solikeeryouwilllike.the
siblingwillactuallystandbyoneanother.Mm.soyup.Icansaythatla.
(FC02PA,English)
 Results
Theme4:ExperiencewithSupport

Experiencewith Experienceof
Support HealthcareServices

ExperienceofFamily
SupportwithExtended
Help
Experienceof Experienceof
CommunityResources Faith
andatWork
 Results
Theme4:ExperiencewithSupport
4.1Experiencewithcommunityresourcesandatwork

whenmydadisinhospital,ermyneighborswillactuallyhelptowatchoverthe
house,especiallylikenowTheykeepaclosewatchonmydadwhenImnotaround.
SoIgotthisreallygoodneighbortothankfor.(MC16PA,English)

4.2Experiencewithfamilysupportandextendedhelp

Okay,majorityofthedaywhenImatwork,sheistheonethatreallyhelps.Sheis
theonethatcookforhim,sheistheonethathelpstospendtimewithhimYa,so
heisshessheisbasicallytheonethatreallyinteractwithhimmajorityoftheday.
(MC16PA,English)
4.3Experienceoffaith

Istopthinkingthiswaythisyear.HonestlyspeakingImaChristiansonowIgofor
willpowerprayer().AfterIstarteddoingthat,Istophavinggrievances
thatitissomuchofatollonme (FS09PC,Mandarin)
 Results
- Interlink themes
- Consistent with
conceptual models:
positive/negative
- Home care services
Contribution of study to existing literature

ESRD is a chronic disease with acute phases;

Caregiver most affected during the first year of
patients diagnosis
Positive appraisals of the experience has
bidirectional influence on social support
received Strength based approach in self-
care education
Home care visits, respite care
Domestic help
Q&A
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