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Factors Associated With Stigma Among Caregivers of Patients With Bipolar isorder in theST!P"B Stud#

Author$ Gonzalez, Jodi ! Perlic", Debora# $! i"lo%itz, Da&id J! 'acz(ns"i, )ic#ard! *ernandez, elissa!

)osen#ec", )obert $! +ul&er, Jenifer ! -stac#er, ic#ael J! .o%den, +#arles Publication info$ Ps(c#iatric /er&ices 51 Jan 2004: 16

ProQuest document lin"

Abstract$ -b7ecti&e: ittle is "no%n about t#e factors contributing to mental illness stigma among caregi&ers of

8eo8le %it# bi8olar disorder et#ods: $ total of 500 caregi&ers of 8atients 8artici8ating in t#e /(stematic

9reatment n#ancement Program for .i8olar Disorder /9P6.D4 stud( %ere inter&ie%ed in a cross6sectional

design on measures of stigma, mood, burden, and co8ing )elati&es and friends %it# bi8olar disorder %ere

assessed on measures of diagnosis and clinical status, determined b( a da(s6%ell measure deri&ed from

8s(c#iatrist ratings of D/6;< e8isode status .ecause 8atients= clinical status &aried %idel(, se8arate models

%ere run for 8atients %#o %ere eut#(mic for at least t#ree6fourt#s of t#e 8ast (ear %ell grou84 and for t#ose%#o met criteria for an affecti&e e8isode for at least one6fourt# of t#e 8re&ious (ear un%ell grou84 /te8%ise

multi8le regression %as used to identif( 8atient, illness, and caregi&er c#aracteristics associated %it# caregi&er

stigma )esults: ;n t#e un%ell grou8, greater mental illness stigma %as associated %it# bi8olar ; &ersus ;;4

disorder, less social su88ort for t#e caregi&er, fe%er caregi&er social interactions, and being a caregi&er of

*is8anic descent ;n t#e %ell grou8, greater stigma %as associated %it# being a caregi&er %#o is t#e adult c#ild

of a 8arent %it# bi8olar disorder, %#o #as a college education, %#o #as fe%er social interactions, and %#o cares

for a female bi8olar 8atient +onclusions: ental illness stigma %as found to be 8re&alent among caregi&ers of

8ersons %it# bi8olar disorder %#o #a&e acti&e s(m8toms as %ell as for caregi&ers of t#ose %#o #a&e remitted

s(m8toms /tigma is t(8icall( associated %it# factors identif(ing 8atients as >different> during s(m8tomatic

8eriods )esearc# is needed to understand #o% t#e stigma e?8erienced b( caregi&ers during stable 8#ases of

illness differs from t#e stigma e?8erienced during 8atients= illness states @PA.;+$9;-B $./9)$+9C

Full te%t$ /tigmatization in&ol&es a se8aration of indi&iduals labeled as different from >us> %#o are belie&ed to

8ossess negati&e traits, resulting in negati&e emotional reactions, discrimination, and status loss for t#e

stigmatized 8ersons 14 /tigmatization of indi&iduals diagnosed as #a&ing serious mental illnesses #as been

obser&ed across t#e %orld, and t#e famil( members %#o #el8 care for t#em re8ort feeling stigmatized as a

result of t#eir association %it# t#e lo&ed one %it# mental illness 2,3,,54

9#is stud( in&estigated t#e correlates of 8ercei&ed stigma among t#e famil( caregi&ers of 8ersons %it#

diagnoses of bi8olar disorder, a to8ic t#at #as recei&ed little 8rior attention e #(8ot#esized t#at increased

caregi&er stigma is li"el( to be associated %it# 8atient c#aracteristics t#at facilitate an >us6t#em> res8onse b(

e?8osing t#e differences bet%een 8ersons %it# mental illness and t#ose in t#e general 8o8ulation and %it#

caregi&er c#aracteristics t#at increase t#e caregi&er=s &ulnerabilit( to negati&e emotional reactions

+aregi&er c#aracteristics t#at #a&e been found to be associated %it# caregi&ers= increased 8erce8tions of

mental illness stigma include #ig#er education of t#e caregi&er 2,34, (ounger or older age grou8s 5,E4, race or

et#nicit( of t#e caregi&er 4, being a caregi&er %#o is t#e s8ouse of t#e 8erson %it# mental illness or %#o is

female 34, and mental #ealt# 8roblems of t#e caregi&er 4 ore educated caregi&ers ma( be more sensiti&e

to re7ection or status loss or ma( actuall( e?8erience more re7ection 2,F4 emale caregi&ers ma( 8ercei&e

greater stigma 34, 8er#a8s resulting from increased attunement to t#e nuances of inter8ersonal interactions,

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suc# as de&aluation +aregi&ers %#o are #ig#l( burdened, #a&e limited su88ort net%or"s, or #a&e de8ressi&e

s(m8toms ma( also be more sensiti&e to, or ma( e?8erience, greater stigmatization 104 +aregi&ers %#o li&e

%it# t#e 8atient ma( e?8erience more direct discrimination com8ared %it# t#ose %#o do not .ecause

indi&iduals %it# mental illness from racial or et#nic minorit( grou8s li&e %it# t#eir famil( more often t#an t#ose

%#o are %#ite 11,124, t#eir caregi&ers ma( e?8erience more stigma

Patient c#aracteristics associated %it# caregi&ers= greater 8erce8tions of mental illness stigma include (oungerage of illness onset, longer illness duration 3,54, and bot# male and female gender 2,3,54 ;n t#e earl( 8#ases

of t#e illness, usuall( during late adolescence or earl( adult#ood, caregi&ers= 8erce8tions of stigma ma( be

greater because t#e illness interferes %it# t#e affected indi&idual=s de&elo8mental tas"s or meeting social role

e?8ectations +ertain illness c#aracteristics or comorbid features of bi8olar disorder ma( also increase t#e

li"eli#ood of being labeled as different from 8eers .i8olar ; disorder ma( result in greater 8erce8tions of stigma

t#an bi8olar ;; disorder, because bi8olar ;; disorder does not in&ol&e im8airing be#a&iors or #os8italization, bot#

of %#ic# ma( identif( t#e 8atient as different Possessing more t#an one stigmatizing attribute 13466suc# as

#a&ing bi8olar disorder and being an >addict,> #a&ing a #istor( of arrests, or #a&ing 8rior 8s(c#iatric

#os8italizations66ma( e?acerbate caregi&ers= 8ercei&ed or e?8erienced stigma

;n contrast to t#e studies cited abo&e, t#e stud( 8resented #ere e?amined a broad sam8le of indi&iduals %it#

bi8olar disorder, some of %#om #ad been stable o&er t#e 8re&ious (ear and some of %#om #ad been ill

t#roug#out most of t#e 8rior (ear $lt#oug# labeling t#eor( 8osits t#at mental illness stigma 8ersists once

labeling #as occurred, irres8ecti&e of s(m8tomatic im8ro&ement 1,154, em8irical researc# #as demonstrated

t#at caregi&ers= 8erce8tions of stigma ma( decrease as t#e 8atient reco&ers 24, e&en %#en t#e 8atient #as #ad

a 8s(c#iatric #os8italization in t#e remote 8ast 34 in" and colleagues 1E4 #a&e also suggested t#at t#e

strengt# of t#e association bet%een stigma and a 8articular &ariable ma( decrease as t#e illness im8ro&es and

acti&e s(m8toms no longer identif( t#e indi&idual as different .ecause #(8ot#esized associations bet%een

8atient and caregi&er c#aracteristics and stigma 8erce8tions could be %ea"ened b( inclusion of stabl(

as(m8tomatic indi&iduals, %e focused #(8ot#esis testing on caregi&ers of 8atients in t#e /(stematic 9reatment

n#ancement Program for .i8olar Disorder /9P6.D4 %#o %ere recentl( s(m8tomatic defined belo%4

e #(8ot#esized t#at caregi&ers of female 8atients, %#o #ad earlier age of illness onset, a greater number of

8s(c#iatric #os8italizations, bi8olar ; disorder, substance use comorbidit(, and a 8rior arrest #istor( %ould re8ort

#ig#er le&els of stigma t#an caregi&ers of 8atients %it#out t#ese attributes e 8redicted t#at female caregi&ers

%#o %ere s8ouses, %ere more educated, %ere (ounger, li&ed %it# t#e 8atient, #ad fe%er social su88orts, #ad

greater burden, and #ad more de8ressi&e s(m8toms %ould re8ort greater mental illness stigma t#nicit( or

race associations %it# stigma %ere e?amined on an e?8lorator( basis $ grou8 of caregi&ers of stable /9P6.D

8atients ser&ed as a com8arison grou8

et#ods

Study design

9#is stud( em8lo(ed baseline data from t#e amil( ?8erience /tud( /4 to test t#e abo&e #(8ot#eses /

is a national, multisite stud( of 500 caregi&ers= e?8eriences %it# indi&iduals %it# bi8olar disorder 14 /

caregi&er inter&ie% data %ere collected in con7unction %it# t#e /9P6.D, a longitudinal treatment effecti&eness

stud( for indi&iduals %it# bi8olar disorder t#at enrolled 8atients bet%een Bo&ember 1FFF and Januar( 200

Details of t#e /9P6.D design are furt#er detailed b( /ac#s and colleagues 14

Patients and caregi&ers for t#e stud( 8resented #ere %ere recruited in out8atient clinics from eig#t /9P6.D

sites 8artici8ating in / nrollment for / began in Jul( of 2002, and follo%6u8 caregi&er inter&ie%s %ere

conducted at si? and 12 mont#s after a baseline inter&ie% +onsenting 8atients identified t#e friend or famil(

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member most in&ol&ed in t#eir care66t#at is, t#e 8erson %#o res8onds in an emergenc(, attends a88ointments,

8ro&ides financial assistance, or interacts on a dail( basis $ll 8atients 8ro&ided informed %ritten consent, and

t#e stud( %as re&ie%ed and a88ro&ed b( t#eir res8ecti&e uni&ersit( #uman researc# committees +aregi&ers

%ere t#en in&ited to 8artici8ate during 8atient &isits or b( 8#one 9#ose 8ro&iding %ritten informed consent %ere

assessed on baseline measures of stress, co8ing, #ealt#, and ser&ice use b( 8#one or in 8erson for about F0

minutes +aregi&er inter&ie%s %ere coordinated %it# t#e 8atient &isit sc#edule so as to be administered %it#in

30 da(s of t#e 8s(c#iatric clinical or data collection &isit 9#e stud( 8resented #ere re8orts cross6sectional data

from t#e caregi&er baseline assessments onl(, collected from Jul( 2002 to Januar( 200 $dditional details of

t#e stud( are a&ailable in a re8ort b( Perlic" and colleagues 14

Patient assessments

Diagnoses.9#e bi8olar disorder diagnosis ;, ;;, and not ot#er%ise s8ecified and sc#izoaffecti&e, bi8olar t(8e4

%as made t#roug# a standardized affecti&e disorder e&aluation $D4 1F4 9#e $D includes a modified

&ersion of t#e mood and 8s(c#osis modules from t#e /tructured +linical ;nter&ie% for D/6;< 204 9#e $D

assesses for 8rior arrests coded as (es or no4 $lco#ol and substance use disorders %ere determined b( using

t#e ini6;nternational Beuro8s(c#iatric ;nter&ie% Plus, &ersion 50 ;B;4, a semistructured inter&ie% designedto identif( current ma7or a?is ; disorders %it#in t#e 8ast 12 mont#s4 214 $lco#ol use comorbidit( included

abuse or de8endence or bot#, and substance use comorbidit( included abuse or de8endence or bot# of an(

nonalco#ol substance 9#e $D and ;B; %ere com8leted at /9P6.D entr( b( /9P6.D trained clinicians

Days well.Patient clinical status %as assessed b( calculating t#e number of da(s in %#ic# t#e 8atient %as >%ell>

t#at is, none8isodic4 in t#e first (ear of #is or #er 8artici8ation in /9P6.D 9#is measure, calculated b( t#e

/9P6.D data center, %as based 8rimaril( on DSM-IVcriteria for mood e8isodes assessed at eac# 8s(c#iatric

&isit b( using t#e clinical monitoring form 14 9#e mean number of 8s(c#iatric &isits during t#is first (ear %as

F3HI31 )esearc# assessments %it# t#e ontgomer( $sberg De8ression )ating /cale 224 and t#e oung

ania )ating /cale 234 as %ell as recent 8s(c#iatric #os8italizations %ere also considered in t#e determinationof da(s %ell 9#e number of da(s bet%een clinical &isits %as used in estimating t#e number of da(s t#at t#e

8atient %as considered to be %ell or un%ell or e?am8le, %#en t#e 8atient %as none8isodic at t%o consecuti&e

&isits, #e or s#e %as considered %ell during t#at inter&al ;f t#e 8atient %as e8isodic at bot# clinical &isits, #e or

s#e %as considered un%ell for t#e da(s during t#at inter&al ;f t#e 8atient %as none8isodic one &isit and e8isodic

t#e ne?t, #e or s#e %as considered %ell #alf of t#e da(s during t#at inter&al

$ ma7orit( of caregi&ers 25 of 500 caregi&ers, or 55K4 com8leted t#e baseline inter&ie% during t#e 8atient=s

first (ear in /9P6.D, %#en da(s6%ell data %ere being collected 9#is %as true for 8atients enrolled in /9P6

.D during or after Jul( 2002 %#en t#e / began or t#e remaining 5K of caregi&ers %#ose 8atient6relati&e

entered /9P6.D before Jul( 2002, da(s6%ell ratings %ere retros8ecti&e

e #(8ot#esized t#at associations bet%een 8atient and caregi&er c#aracteristics and caregi&er stigma

8erce8tions %ould be e&ident onl( for 8atients %#o %ere currentl( or #ad recentl( been s(m8tomatic

Baturalistic studies of bi8olar disorder re8ort t#at a ma7orit( of 8atients remain s(m8tomatic after an acute

e8isode and are not able to maintain role 8erformance for at least #alf of t#e follo%ing (ear 2,254 -n t#e

basis of t#ese findings, 8atients %#o %ere none8isodic for more t#an t#ree6fourt#s of t#e (ear %ere defined as

being in t#e >%ell grou8> 9#e remainder %ere classified as being in t#e >un%ell grou8>

Caregiver assessments

CES-D.9#e +enter for 8idemiologic /tudies De8ression /cale +/6D4 2E4 %as used to assess de8ressi&e

s(m8tomatolog( 9#e +/6D is a 206item scale %it# construct &alidit( Pearson=s rL64 and cross6cultural

&alidit( 2,24



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Caregiver burden.9#e /ocial .e#a&ior $ssessment /c#edule 2F4 assesses 8atient 8roblematic be#a&ior and

social role 8erformance defined as ob7ecti&e burden4 and ad&erse effects on ot#ers im8act of 8atient=s illness

on t#e caregi&er=s %or", social life, and emotional and 8#(sical %ell6being! defined as sub7ecti&e burden4

;nterrater reliabilit( #as been re8orted for sub7ecti&e burden subscales: for 8roblem be#a&ior, E for role

d(sfunction, and 1 for ad&erse effects 304! four items %ere added to t(8if( manic68#ase be#a&iors and

s(m8toms, for a total of 3F items ac# item #as an ob7ecti&e and sub7ecti&e rating, bot# scored on a 368oint

ran"ed scale or e?am8le, t#e caregi&er is as"ed to %#at degree t#e 8atient %as %it#dra%n in t#e 8ast si?

mont#s ob7ecti&e burden4 and t#en to %#at degree t#e caregi&er %as distressed b( t#e %it#dra%al sub7ecti&e

burden4 /cales %ere summed for a total scale score

Social interactions./ocial interactions %ere assessed %it# an 116item brief form 314 of t#e Du"e /ocial /u88ort

;nde? D//;4 324 9#e D//; as"s about freMuenc( of social interactions in t#e 8re&ious %ee" and t#en

sub7ecti&e e?8erience of social su88ort, ran"ed on a 368oint scale ranging from 1, #ardl( e&er feeling su88orted,

to 3, feeling su88orted most of t#e time

Mental illness stigma.ental illness stigma %as measured b( t#e Discrimination6De&aluation /cale DD/4, a

combination of t#e Patient De&aluation and /tigma /cale 154 and t#e amil( De&aluation and /tigma /cale334 9#e DD/ is a 156item measure rating caregi&ers= &ie%s about most 8eo8le=s acce8tance of mental illness

/cores are ran"ed on a 68oint scale ranging from 1, strongl( agree, to , strongl( disagree ig#t Muestions

assess 8atient6focused stigma, suc# as >ost 8eo8le loo" do%n on someone %#o once %as a 8atient in a

mental #os8ital> /e&en Muestions assess caregi&er6focused stigma, suc# as >ost 8eo8le do not blame

8arents for t#e mental illness of t#eir c#ildren> ;tems %ere summed for an o&erall stigma score, %it# #ig#er

scores indicating greater 8erce8tions of mental illness stigma $ 8rior stud( re8orted moderatel( #ig#

correlations of t#ese combined scales %it# t%o caregi&er sam8les 5 and E24 4

Statistical analysis

eans and standard de&iations %ere calculated for continuous &ariables, and 8ro8ortions %ere calculated for

categorical &ariables e stratified 8atients b( clinical status, using t#e da(s6%ell &ariable, and tested

#(8ot#eses se8aratel( for t#e resulting %ell and un%ell grou8s e first e?amined %#et#er stigma scores

subscales and t#en o&erall score4 %ere #ig#er for t#e un%ell grou8 .i&ariate anal(ses %ere conducted to

e?amine associations %it# 8ercei&ed stigma Pearson 8roduct6moment correlations %ere used for continuous

&ariables, and anal(sis of &ariance %as used for categorical &ariables, %it# .onferroni corrections to ad7ust for

t#e number of 8ost #oc com8arisons 9#e o&erall stigma score %as used to re8resent 8ercei&ed stigma in t#ese

anal(ses, because t#e o&erall scale #ad t#e #ig#est internal consistenc( reliabilit( E &ersus 5 for t#e 8atient

scale and 0 for t#e caregi&er scale4

?8lorator( multi&ariate linear regression %it# a bac"%ard ste8%ise 8rocedure %as em8lo(ed to e&aluate t#e

associations bet%een stigma and &ariables t#at #ad s#o%n significant relations#i8s 8N054 %it# stigma in t#e

bi&ariate anal(ses $nal(ses %ere run se8aratel( for t#e %ell and un%ell grou8s

;n &ie% of &ariations in t#e timing of t#e caregi&er baseline inter&ie% in relation to t#e 8eriod during %#ic# da(s6

%ell data %ere collected, t#e abo&e bi&ariate anal(ses %ere re8eated as a reliabilit( c#ec" e used t#e cross6

sections clinical status rating lin"ed to t#e caregi&er inter&ie% t#at is, %it#in 30 da(s4, %#ic# also c#aracterized

t#e 8atient as un%ell t#at is, met criteria for a subs(ndromal or ma7or mood e8isode4 or %ell t#at is,

reco&ered4

)esults

Degree of stigma and correlates

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9able 1 8ro&ides descri8ti&e statistics for caregi&ers and 8atients or t#e 8atient6focused subscale of mental

illness stigma, a&eraged across items, a ma7orit( of caregi&ers agreed or strongl( agreed %it# EEK of stigma

endorsing statements data not s#o%n4 or t#e caregi&er6focused subscale of mental illness stigma, a ma7orit(

of caregi&ers agreed or strongl( agreed %it# 3K of stigma6endorsing statements 9#ere %ere no significant

differences bet%een %ell and un%ell grou8s on scores of 8atient stigma, caregi&er stigma, or o&erall stigma

+orrelates of stigma o&er a (ear for %ell and un%ell grou8s in bi&ariate anal(ses are re8orted in 9able 2 or t#eun%ell grou8, significant correlates of stigma %ere entered into a regression eMuation as inde8endent &ariables:

8atient age at first treatment, 8atient #os8italizations (es or no4, number of 8atient #os8italizations, bi8olar ;

disorder &ersus bi8olar ;; disorder, ob7ecti&e and sub7ecti&e caregi&er burden, caregi&er et#nicit( *is8anic

&ersus all ot#ers4, caregi&er +/6D score, current 8s(c#otro8ic medication ta"en b( caregi&er (es or no4,

number of caregi&er %ee"l( social interactions, and 8ercei&ed caregi&er social su88ort $s s#o%n in 9able 3,

bi8olar ; disorder, as o88osed to bi8olar ;; disorder, remained associated %it# greater stigma tL6133, dfL5,251,

8L04 *is8anic et#nicit( tL21, dfL5,251, 8L0054, fe%er %ee"l( social interactions tL6201, df L5,251,

8L024, and less 8ercei&ed social su88ort tL6253, dfL5,251, 8L024 also remained associated %it# greater

stigma Gi&en t#e smaller number of *is8anic caregi&ers, outlier diagnostics %ere used to e&aluate t#e

8resence of stigma scores be(ond t%o standard de&iations from t#e mean t#at mig#t #a&e influenced t#e

findings! no outlier scores %ere found for t#is grou8

or t#e %ell grou8, 8redictor &ariables %ere entered in t#e multi&ariate regression: 8atient gender, caregi&er

education le&el, relations#i8 of caregi&er to 8atient adult c#ild &ersus all ot#ers4, and number of %ee"l(

caregi&er social interactions $s s#o%n in 9able , &ariables t#at remained associated %it# greater stigma

8erce8tions %ere female gender of t#e 8atient tL250, dfL,113, 8L014, caregi&ers %#o %ere c#ildren of t#e

indi&idual %it# bi8olar disorder tL23, dfL,113, 8L024, caregi&ers %it# at least a college education tL212,

dfL,113, 8L04, and caregi&ers %it# fe%er %ee"l( social interactions tL61FE, dfL,113, 8L054

9#e bi&ariate anal(ses t#at substituted clinical status from %it#in 30 da(s of t#e more recent clinical statuslin"ed to t#e caregi&er baseline inter&ie% demonstrated an almost identical 8attern of results from da(s %ell in a

(ear, %it# t#e Pearson r and &alues #ig#l( similar #en using t#e cross6sectional clinical status measure,

some significant associations %ere reduced to trends, com8ared %it# t#e measure of da(s %ell o&er a (ear, a

more reliable measure of %#at relati&es face da( to da(

Discussion

9#is stud( e?amined associations of 8atient, illness, and caregi&er c#aracteristics %it# caregi&ers= 8ercei&ed

stigma in bi8olar disorder e #(8ot#esized t#at for caregi&ers of 8atients %#o #ad recentl( e?#ibited acti&e

s(m8toms, t#e caregi&er, 8atient, and illness attributes t#at clearl( identified t#e 8atient as different from ot#ers

or t#at increased caregi&er susce8tibilit( to social re7ection %ould be associated %it# #ig#er le&els of 8ercei&ed

stigma -ur #(8ot#eses %ere borne out in 8art $mong t#e 8atient c#aracteristics, earl( age of onset, a greater

number of #os8italizations, and being diagnosed as #a&ing a more se&ere t(8e of illness %ere associated %it#

#ig#er le&els of caregi&ers= 8ercei&ed stigma at t#e bi&ariate le&el *o%e&er, onl( illness t(8e remained

significant at t#e multi&ariate le&el, 8er#a8s because of s#ared &ariance bet%een t#ese measures $mong t#e

caregi&er c#aracteristics, #ig#er le&els of burden, de8ressed mood, and lo%er le&els of social su88ort %ere

associated %it# #ig#er le&els of 8ercei&ed stigma, alt#oug# onl( social su88ort remained significant at t#e

multi&ariate le&el

+aregi&ers %#ose relati&es dis8la( a more se&ere t(8e of bi8olar disorder 8ercei&e #ig#er le&els of stigma!

#o%e&er, stigma e?8eriences are less distressing for caregi&ers %#o are surrounded b( su88orti&e 8ersons %#o

are less li"el( to stigmatize -r, caregi&ers %#o 8ercei&e less stigma ma( be more li"el( to see" social su88ort



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9#e finding t#at *is8anic caregi&ers #ad #ig#er le&els of 8ercei&ed stigma t#an ot#er caregi&ers s#ould be

regarded as 8reliminar( and inter8reted %it# caution gi&en t#e small sam8le $lt#oug# more of t#e 8atients %#o

#ad *is8anic caregi&ers resided %it# t#em 2K of 8atients %it# *is8anic caregi&ers com8ared %it# 5F K to

E5K of 8atients %it# caregi&ers from ot#er racial or et#nic grou8s4, co6residence %as not a significant correlate

of stigma, and t#us more direct e?8osure of t#ese caregi&ers to mental illness discrimination did not a88ear to

e?8lain t#is finding

Correlates of stigma within the well grou

.ecause 8atients in t#e %ell grou8 #ad not been identified as different b( t#eir illness s(m8toms for t#e greater

8art of one (ear or longer, %e did not #(8ot#esize t#at t#ere %ould be associations bet%een 8atient illness

features, caregi&er stress, or ot#er measures to 8ercei&ed stigma +ontrar( to e?8ectations, %e found t#at bot#

8atient and caregi&er attributes female gender of t#e 8atient, more caregi&er education, fe%er social

interactions, and being an adult c#ild of t#e 8atient4 %ere significantl( associated %it# 8ercei&ed stigma at t#e

multi&ariate le&el ;nterestingl(, #o%e&er, t#e &ariables associated %it# stigma in t#e %ell grou8 differed from

t#ose associated %it# stigma in t#e un%ell grou8

-ur results suggest t#at stigma does not sim8l( subside %#en s(m8toms remit but rat#er is related to different

factors 9#e finding t#at caregi&ers in t#e %ell grou8 8ercei&e as muc# stigma o&erall as caregi&ers in t#e un%ell

grou8 furt#er su88orts t#is &ie% -ne 8otential e?8lanation for t#is 8attern of findings is t#at social role

e?8ectations and s(stem interactions differ based on t#e >%ellness> of a 8erson or e?am8le, college6educated

caregi&ers ma( #a&e #ig#er as8irations for t#eir relati&e %it# bi8olar disorder, %#ic# are onl( o8erational %#en

t#e relati&e is %ell and able to return to %or" or sc#ool ngaging in more demanding social role acti&ities mig#t

also e?8ose deficiencies or residual s(m8toms leading to de&aluation or re7ection, or it mig#t create stress,

%#ic# e?acerbates stigmatizing illness s(m8toms

;ncreased social role e?8ectations ma( also e?8lain t#e association bet%een female gender of t#e 8atient and

stigma in t#e %ell grou8 emales are more often e?8ected to socialize %it# ot#ers outside t#e famil(, and famil(

members ma( feel more stigmatized if t#eir female s8ouse or c#ild %it# bi8olar disorder does not li&e u8 to t#is

social role e?8ectation $lternati&el(, female 8atients %#o assume or resume t#eir social and occu8ational

acti&ities ma( be more discriminated against t#an t#eir male counter8arts for manic or #(8omanic be#a&iors,

suc# as inter8ersonal aggression, #(8erse?ualit(, and ris" ta"ing, because t#ese traits are more sociall(

acce8table in males 9#e role of caregi&er for adult c#ildren ma( be es8eciall( stigmatizing, because caring for

a 8arent earl( in life is at(8ical! suc# 8erce8tions of stigma ma( be #eig#tened during 8eriods of s(m8tom

remission %#en t#e 8arent resumes going to %or" or social functions and is t#us more li"el( to e?8ose #is or

#er c#ild to e?8eriences or re8orts of re7ection ;n contrast to t#e abo&e findings limited to t#e %ell grou8, t#e

finding t#at increased stigma %as associated %it# decreased social interactions %as significant for bot# grou8s,suggesting t#at social su88ort is an im8ortant correlate of stigma for caregi&ers during all 8#ases of t#e

relati&e=s illness

Comarison with other studies and limitations

-ur findings differed from t#ose of ot#er studies t#at found t#at caregi&er gender and age %ere associated %it#

8ercei&ed stigma Patient gender, caregi&er education le&el, and caregi&er relations#i8 to t#e 8atient %ere

related to stigma, but onl( in t#e %ell grou8, and it %as adult c#ildren in t#is grou8 %#o re8orted t#e most

stigma, rat#er t#an s8ouses as in 8rior studies Differences bet%een our findings and 8rior studies ma( be

attributed to differences in caregi&er sam8les, 8atient sam8les, or measures of stigma or e?am8le, education

le&el %as relati&el( #ig# in t#is grou8 of 8atients and caregi&ers, and a s"e%ed distribution or restricted range

mig#t lead to negati&e findings in t#e un%ell grou8 -ur sam8le %as also larger and more #eterogeneous t#an



9/12

t#ose em8lo(ed in ot#er studies, 8otentiall( obscuring relations#i8s obser&able in a sam8le %it# fe%er

e?traneous sources of &ariance ost studies #a&e not e&aluated t#e strengt# of associations %it# stigma in

relation to 8atient clinical status, and our findings suggest t#at results ma( differ de8ending on 8atient s(m8tom

le&el inall(, t#e measure of stigma %e em8lo(ed assesses t#e stigmatizing beliefs attributed to >most 8eo8le,>

%#ereas measures from 8rior studies #a&e inMuired about t#e caregi&er=s direct e?8erience of discrimination

and mig#t #a&e (ielded more 8ositi&e findings

9#is stud( #as se&eral limitations .ecause caregi&ers declining 8artici8ation or %#ose famil( members %ere

not in acti&e treatment %ere not in&estigated, %e ma( #a&e e?cluded t#e most stigmatized caregi&ers 9#is %as

a cross6sectional stud( t#at 8recludes dra%ing causal inferences Ase of Mualitati&e met#ods mig#t #a&e

en#anced inter8retation of findings )e8lication of our findings regarding race or et#nicit( and stigma in larger

sam8les is needed ;n addition, furt#er in&estigation of 8articular stigma e?8eriences is needed to e?amine t#e

relations#i8 bet%een social role e?8ectations and caregi&er stigma for 8atients %#ose s(m8toms #a&e

stabilized

+onclusions

$t t#e communit( le&el, inter&entions t#at decrease mental illness stigma mig#t increase t#e li"eli#ood t#at

%#en needed, famil( members %ill see" social su88ort, %#ic# is e&identl( Muite im8ortant for caregi&ers $t t#e

indi&idual le&el, a significant number of caregi&ers %ere recei&ing medication for emotional 8roblems e&el of

functioning, sociocultural conte?t, and 8articular factors &ie%ed as stigmatizing for e?am8le, labeling and

s(m8toms4 s#ould be considered %#en determining t#e social and de&elo8mental issues of greatest concern to

t#e famil( ;n treatment for caregi&ers, im8ro&ing t#e Mualit( and Muantit( of social su88ort s#ould be a 8rimar(

recommendation for e?am8le, t#e De8ression and .i8olar /u88ort $lliance4 #en caregi&ers #a&e no

8s(c#iatric diagnosis, famil( t#era8( %it#out t#e 8atient 8resent is a&ailable! #o%e&er, t#e lac" of medical

insurance co&erage of t#is treatment remains a 8roblem

$c"no%ledgments and disclosures

9#is stud( %as conducted %it# t#e su88ort of grants B016*60001 and )016*6E5015 from t#e Bational

;nstitute of ental *ealt# 9#e aut#ors t#an" Gar( / /ac#s, D, and ic#ael 9#ase, D, 8rinci8al

in&estigators for t#e /9P6.D 9#e /9P6.D amil( ?8erience +ollaborati&e /tud( Grou8 consisted of

Jose8# ) +alabrese, D, 9erence $ 'etter, D, ar" osse(, D, auren . arangell, D, $ndre% $

Bierenberg, D, and Ja(endra Patel, D

Dr .o%den re8orts recei&ing researc# grants from $bbott aboratories, .ristol6(ers /Muibb, lan

P#armaceuticals, Gla?o/mit#6'line, Janssen, ill( )esearc#, t#e Bational ;nstitute of ental *ealt#, Par"e

Da&is, /mit# 'line .eec#am, and /tanle( edical )esearc# oundation! being a consultant for $bbott

aboratories, Gla?o/mit#'line, Janssen, ill( )esearc#, /anofi6/(nt#elabo, and A+. P#arma! and being 8art

of a s8ea"er=s bureau for $bbott aboratories, Gla?o/mit#'line, Janssen, ill( )esearc#, and Pfizer Dr +ul&er

re8orts recei&ing funding from $bbott aboratories, $straOeneca P#armaceuticals, .ristol6(ers /Muibb, isai,

li ill(, Gla?o/mit#'line, Pfizer, )e8liGen, and (et# P#armaceuticals Dr -stac#er re8orts recei&ing

#onoraria from $straOeneca, .ristol6(ers /Muibb, Gla?o/mit#'line, Pfizer, Janssen, and +oncordant )ater

/(stems and recei&ing researc# funding from Pfizer 9#e ot#er aut#ors re8ort no com8eting interests

)eferences

1 in" .G, ang *, P#elan J+, et al: easuring mental illness stigma /c#izo8#renia .ulletin 30:511651,

200

2 P#elan J+, .romet J, in" .G: Ps(c#iatric illness and famil( stigma /c#izo8#renia .ulletin 2:115612E,

10 December 2013 Page F of 12 ProQuest


10/12

1FF

3 P#illi8s ), Pearson la(ering> of stigmatized conditions,

suc# as serious mental illness and *;


11/12

de&elo8ment and &alidation of a structured diagnostic 8s(c#iatric inter&ie% for D/6;< and ;+D610 Journal of

+linical Ps(c#iatr( 5Fsu88l 204:22633, 1FF

22 ontgomer( /$, $sberg : $ ne% de8ression scale designed to be sensiti&e to c#ange .ritis# Journal of

Ps(c#iatr( 13:3263F, 1FF

23 oung )+, .iggs J9, Oiegler


12/12

%it# t#e De8artment of Ps(c#iatr(, *ar&ard edical /c#ool, .oston

Sub&ect$ +aregi&ers! .i8olar disorder! Ps(c#ological as8ects! Ps(c#iatr(!

'eS($$dolescent, $dult, $ged, +ost of ;llness, +ross6/ectional /tudies, emale, *umans, ale, iddle $ged,

Ps(c#olog(, /e&erit( of ;llness ;nde?, /ocial /u88ort, .i8olar Disorder 66 8s(c#olog( ma7or4, .i8olar Disorder 66

t#era8( ma7or4, +aregi&ers 66 8s(c#olog( ma7or4, +aregi&ers 66 statistics S numerical data ma7or4, De8ression

66 e8idemiolog( ma7or4, De8ression 66 8s(c#olog( ma7or4, *ealt# Promotion ma7or4, /tereot(8ing ma7or4

Corporate)institutional author$ /9P6.D amil( ?8erience /tud( Grou8

Publication title$ Ps(c#iatric /er&ices

*olume$ 5

Issue$ 1

Pages$ 16

Publication #ear$ 200

Publication date$ Jan 200

+ear$ 200

Publisher$$merican Ps(c#iatric Publis#ing, ;nc

Place of publication$$rlington

Countr# of publication$ Anited /tates

Publication sub&ect$ *ealt# acilities $nd $dministration, edical /ciences66Ps(c#iatr( $nd Beurolog(

ISS,$ 105230

Source t#pe$ /c#olarl( Journals

-anguage of publication$ nglis#

ocument t#pe$ Journal $rticle

Accession number$ 121511

ProQuest document I$ 21312EFFF

ocument .R-$ #tt8:TTsearc#8roMuestcomTdoc&ie%T21312EFFFaccountidL50E3

Cop#right$ +o8(rig#t $merican Ps(c#iatric Publis#ing, ;nc Jan 200

-ast updated$ 201360260F

atabase$ ProQuest edical ibrar(,ProQuest Ps(c#olog( Journals

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