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Factors Associated With Stigma Among Caregivers of Patients With Bipolar isorder in the ST!P"B Stud#
Author$ Gonzalez, Jodi ! Perlic", Debora# $! i"lo%itz, Da&id J! 'acz(ns"i, )ic#ard! *ernandez, ic#ael J! .o%den, +#arles , elissa! )osen#ec", )obert $! +ul&er, Jenifer ,! -stac#er,

Publication info$ Ps(c#iatric /er&ices 5011 2Jan 20034: 51601 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 disorder1 et#ods: $ total of 500 caregi&ers of 8atients 8artici8ating in t#e /(stematic 9reatment :n#ancement Program for .i8olar Disorder 2/9:P6.D4 stud( %ere inter&ie%ed in a cross6sectional design on measures of stigma, mood, burden, and co8ing1 )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 status1 .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 2%ell grou84 and for t#ose %#o met criteria for an affecti&e e8isode for at least one6fourt# of t#e 8re&ious (ear 2un%ell grou841 /te8%ise multi8le regression %as used to identif( 8atient, illness, and caregi&er c#aracteristics associated %it# caregi&er stigma1 )esults: ;n t#e un%ell grou8, greater mental illness stigma %as associated %it# bi8olar ; 2&ersus ;;4 disorder, less social su88ort for t#e caregi&er, fe%er caregi&er social interactions, and being a caregi&er of *is8anic descent1 ;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 8atient1 +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(m8toms1 /tigma is t(8icall( associated %it# factors identif(ing 8atients as >different> during s(m8tomatic 8eriods1 )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 states1 @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 2141 /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 22,3,5,541 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 attention1 De #(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 reactions1 +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 22,34, (ounger or older age grou8s 25,E4, race or et#nicit( of t#e caregi&er 234, being a caregi&er %#o is t#e s8ouse of t#e 8erson %it# mental illness or %#o is female 234, and mental #ealt# 8roblems of t#e caregi&er 2041 ore educated caregi&ers ma( be more sensiti&e to re7ection or status loss or ma( actuall( e?8erience more re7ection 22,F41 Gemale caregi&ers ma( 8ercei&e greater stigma 234, 8er#a8s resulting from increased attunement to t#e nuances of inter8ersonal interactions, 10 December 2013 Page 3 of 12 ProQuest

suc# as de&aluation1 +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 21041 +aregi&ers %#o li&e %it# t#e 8atient ma( e?8erience more direct discrimination com8ared %it# t#ose %#o do not1 .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 211,124, t#eir caregi&ers ma( e?8erience more stigma1 Patient c#aracteristics associated %it# caregi&ers= greater 8erce8tions of mental illness stigma include (ounger age of illness onset, longer illness duration 23,54, and bot# male and female gender 22,3,541 ;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?8ectations1 +ertain illness c#aracteristics or comorbid features of bi8olar disorder ma( also increase t#e li"eli#ood of being labeled as different from 8eers1 .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 different1 Possessing more t#an one stigmatizing attribute 213466suc# 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 stigma1 ;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 (ear1 $lt#oug# labeling t#eor( 8osits t#at mental illness stigma 8ersists once labeling #as occurred, irres8ecti&e of s(m8tomatic im8ro&ement 215,154, em8irical researc# #as demonstrated t#at caregi&ers= 8erce8tions of stigma ma( decrease as t#e 8atient reco&ers 224, e&en %#en t#e 8atient #as #ad a 8s(c#iatric #os8italization in t#e remote 8ast 2341 ,in" and colleagues 21E4 #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 different1 .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 2/9:P6.D4 %#o %ere recentl( s(m8tomatic 2defined belo%41 De #(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 attributes1 De 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 stigma1 :t#nicit( or race associations %it# stigma %ere e?amined on an e?8lorator( basis1 $ grou8 of caregi&ers of stable /9:P6.D 8atients ser&ed as a com8arison grou81 et#ods Study design 9#is stud( em8lo(ed baseline data from t#e Gamil( :?8erience /tud( 2G:/4 to test t#e abo&e #(8ot#eses1 G:/ is a national, multisite stud( of 500 caregi&ers= e?8eriences %it# indi&iduals %it# bi8olar disorder 21341 G:/ caregi&er inter&ie% data %ere collected in con7unction %it# t#e /9:P6.D, a longitudinal treatment effecti&eness stud( for indi&iduals %it# bi8olar disorder t#at enrolled 8atients bet%een Bo&ember 1FFF and Januar( 20051 Details of t#e /9:P6.D design are furt#er detailed b( /ac#s and colleagues 21041 Patients and caregi&ers for t#e stud( 8resented #ere %ere recruited in out8atient clinics from eig#t /9:P6.D sites 8artici8ating in G:/1 :nrollment for G:/ 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%1 +onsenting 8atients identified t#e friend or famil( 10 December 2013 Page 5 of 12 ProQuest

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( basis1 $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# committees1 +aregi&ers %ere t#en in&ited to 8artici8ate during 8atient &isits or b( 8#one1 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 minutes1 +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 &isit1 9#e stud( 8resented #ere re8orts cross6sectional data from t#e caregi&er baseline assessments onl(, collected from Jul( 2002 to Januar( 20051 $dditional details of t#e stud( are a&ailable in a re8ort b( Perlic" and colleagues 21341 Patient assessments Diagnoses. 9#e bi8olar disorder diagnosis 2;, ;;, and not ot#er%ise s8ecified and sc#izoaffecti&e, bi8olar t(8e4 %as made t#roug# a standardized affecti&e disorder e&aluation 2$D:4 21F41 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;< 22041 9#e $D: assesses for 8rior arrests 2coded as (es or no41 $lco#ol and substance use disorders %ere determined b( using t#e ini6;nternational Beuro8s(c#iatric ;nter&ie% Plus, &ersion 510 2 ;B;4, a semistructured inter&ie% designed to identif( current ma7or a?is ; disorders 2%it#in t#e 8ast 12 mont#s4 22141 $lco#ol use comorbidit( included abuse or de8endence or bot#, and substance use comorbidit( included abuse or de8endence or bot# of an( nonalco#ol substance1 9#e $D: and ;B; %ere com8leted at /9:P6.D entr( b( /9:P6.D trained clinicians1

Days well. Patient clinical status %as assessed b( calculating t#e number of da(s in %#ic# t#e 8atient %as >%ell> 2t#at is, none8isodic4 in t#e first (ear of #is or #er 8artici8ation in /9:P6.D1 9#is measure, calculated b( t#e /9:P6.D data center, %as based 8rimaril( on DSM-IV criteria for mood e8isodes assessed at eac# 8s(c#iatric &isit b( using t#e clinical monitoring form 21041 9#e mean number of 8s(c#iatric &isits during t#is first (ear %as F135HI31311 )esearc# assessments %it# t#e ontgomer( $sberg De8ression )ating /cale 2224 and t#e Joung ania )ating /cale 2234 as %ell as recent 8s(c#iatric #os8italizations %ere also considered in t#e determination of da(s %ell1 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%ell1 Gor 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&al1 ;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&al1 ;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&al1 $ ma7orit( of caregi&ers 2235 of 500 caregi&ers, or 55K4 com8leted t#e baseline inter&ie% during t#e 8atient=s first (ear in /9:P6.D, %#en da(s6%ell data %ere being collected1 9#is %as true for 8atients enrolled in /9:P6 .D during or after Jul( 2002 %#en t#e G:/ began1 Gor t#e remaining 55K of caregi&ers %#ose 8atient6relati&e entered /9:P6.D before Jul( 2002, da(s6%ell ratings %ere retros8ecti&e1 De #(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(m8tomatic1 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 225,2541 -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 grou81> 9#e remainder %ere classified as being in t#e >un%ell grou81> Caregiver assessments CES-D. 9#e +enter for :8idemiologic /tudies De8ression /cale 2+:/6D4 22E4 %as used to assess de8ressi&e s(m8tomatolog(1 9#e +:/6D is a 206item scale %it# construct &alidit( 2Pearson=s rL136104 and cross6cultural &alidit( 223,2041 10 December 2013 Page 5 of 12 ProQuest

Caregiver burden. 9#e /ocial .e#a&ior $ssessment /c#edule 22F4 assesses 8atient 8roblematic be#a&ior and social role 8erformance 2defined as ob7ecti&e burden4 and ad&erse effects on ot#ers 2im8act of 8atient=s illness on t#e caregi&er=s %or", social life, and emotional and 8#(sical %ell6being! defined as sub7ecti&e burden41 ;nterrater reliabilit( #as been re8orted for sub7ecti&e burden subscales: 100 for 8roblem be#a&ior, 13E for role d(sfunction, and 101 for ad&erse effects 2304! four items %ere added to t(8if( manic68#ase be#a&iors and s(m8toms, for a total of 3F items1 :ac# item #as an ob7ecti&e and sub7ecti&e rating, bot# scored on a 368oint ran"ed scale1 Gor 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 2ob7ecti&e burden4 and t#en to %#at degree t#e caregi&er %as distressed b( t#e %it#dra%al 2sub7ecti&e burden41 /cales %ere summed for a total scale score1 Social interactions. /ocial interactions %ere assessed %it# an 116item brief form 2314 of t#e Du"e /ocial /u88ort ;nde? 2D//;4 23241 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 time1 Mental illness stigma. ental illness stigma %as measured b( t#e Discrimination6De&aluation /cale 2DD/4, a

combination of t#e Patient De&aluation and /tigma /cale 2154 and t#e Gamil( De&aluation and /tigma /cale 23341 9#e DD/ is a 156item measure rating caregi&ers= &ie%s about most 8eo8le=s acce8tance of mental illness1 /cores are ran"ed on a 568oint scale ranging from 1, strongl( agree, to 5, strongl( disagree1 :ig#t Muestions assess 8atient6focused stigma, suc# as > ost 8eo8le loo" do%n on someone %#o once %as a 8atient in a mental #os8ital1> /e&en Muestions assess caregi&er6focused stigma, suc# as > ost 8eo8le do not blame 8arents for t#e mental illness of t#eir c#ildren1> ;tems %ere summed for an o&erall stigma score, %it# #ig#er scores indicating greater 8erce8tions of mental illness stigma1 $ 8rior stud( re8orted moderatel( #ig# correlations of t#ese combined scales %it# t%o caregi&er sam8les 2150 and 1E24 2541 Statistical analysis eans and standard de&iations %ere calculated for continuous &ariables, and 8ro8ortions %ere calculated for categorical &ariables1 De 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 grou8s1 De first e?amined %#et#er stigma scores 2subscales and t#en o&erall score4 %ere #ig#er for t#e un%ell grou81 .i&ariate anal(ses %ere conducted to e?amine associations %it# 8ercei&ed stigma1 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 com8arisons1 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( 210E &ersus 135 for t#e 8atient scale and 100 for t#e caregi&er scale41 :?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 28N1054 %it# stigma in t#e bi&ariate anal(ses1 $nal(ses %ere run se8aratel( for t#e %ell and un%ell grou8s1 ;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"1 De used t#e cross6 sections clinical status rating lin"ed to t#e caregi&er inter&ie% 2t#at is, %it#in 30 da(s4, %#ic# also c#aracterized t#e 8atient as un%ell 2t#at is, met criteria for a subs(ndromal or ma7or mood e8isode4 or %ell 2t#at is, reco&ered41 )esults Degree of stigma and correlates 10 December 2013 Page E of 12 ProQuest

9able 1 8ro&ides descri8ti&e statistics for caregi&ers and 8atients1 Gor 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 2data not s#o%n41 Gor t#e caregi&er6focused subscale of mental illness stigma, a ma7orit( of caregi&ers agreed or strongl( agreed %it# 30K of stigma6endorsing statements1 9#ere %ere no significant differences bet%een %ell and un%ell grou8s on scores of 8atient stigma, caregi&er stigma, or o&erall stigma1 +orrelates of stigma o&er a (ear for %ell and un%ell grou8s in bi&ariate anal(ses are re8orted in 9able 21 Gor t#e un%ell grou8, significant correlates of stigma %ere entered into a regression eMuation as inde8endent &ariables: 8atient age at first treatment, 8atient #os8italizations 2(es or no4, number of 8atient #os8italizations, bi8olar ; disorder &ersus bi8olar ;; disorder, ob7ecti&e and sub7ecti&e caregi&er burden, caregi&er et#nicit( 2*is8anic &ersus all ot#ers4, caregi&er +:/6D score, current 8s(c#otro8ic medication ta"en b( caregi&er 2(es or no4, number of caregi&er %ee"l( social interactions, and 8ercei&ed caregi&er social su88ort1 $s s#o%n in 9able 3, bi8olar ; disorder, as o88osed to bi8olar ;; disorder, remained associated %it# greater stigma 2tL61133, dfL5,251, 8L10541 *is8anic et#nicit( 2tL2101, dfL5,251, 8L10054, fe%er %ee"l( social interactions 2tL621501, df L5,251, 8L1024, and less 8ercei&ed social su88ort 2tL62153, dfL5,251, 8L1024 also remained associated %it# greater stigma1 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 grou81 Gor 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 2adult c#ild &ersus all ot#ers4, and number of %ee"l( caregi&er social interactions1 $s s#o%n in 9able 5, &ariables t#at remained associated %it# greater stigma 8erce8tions %ere female gender of t#e 8atient 2tL2150, dfL5,113, 8L1014, caregi&ers %#o %ere c#ildren of t#e indi&idual %it# bi8olar disorder 2tL2153, dfL5,113, 8L1024, caregi&ers %it# at least a college education 2tL2112, dfL5,113, 8L1054, and caregi&ers %it# fe%er %ee"l( social interactions 2tL611FE, dfL5,113, 8L10541 9#e bi&ariate anal(ses t#at substituted clinical status from %it#in 30 da(s of t#e more recent clinical status lin"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 G &alues #ig#l( similar1 D#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(1 Discussion 9#is stud( e?amined associations of 8atient, illness, and caregi&er c#aracteristics %it# caregi&ers= 8ercei&ed stigma in bi8olar disorder1 De #(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 stigma1 -ur #(8ot#eses %ere borne out in 8art1 $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&el1 *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 measures1 $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&el1 +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 stigmatize1 -r, caregi&ers %#o 8ercei&e less stigma ma( be more li"el( to see" social su88ort1 10 December 2013 Page 3 of 12 ProQuest

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 sam8le1 $lt#oug# more of t#e 8atients %#o #ad *is8anic caregi&ers resided %it# t#em 202K 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 finding1 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 stigma1 +ontrar( to e?8ectations, %e found t#at bot# 8atient and caregi&er attributes 2female 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&el1 ;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 grou81 -ur results suggest t#at stigma does not sim8l( subside %#en s(m8toms remit but rat#er is related to different factors1 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%1 -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 8erson1 Gor 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#ool1 :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(m8toms1 ;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 grou81 Gemales 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?8ectation1 $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 males1 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 re7ection1 ;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 illness1 Com arison 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 stigma1 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 studies1 Differences bet%een our findings and 8rior studies ma( be attributed to differences in caregi&er sam8les, 8atient sam8les, or measures of stigma1 Gor 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 grou81 -ur sam8le %as also larger and more #eterogeneous t#an 10 December 2013 Page 0 of 12 ProQuest

t#ose em8lo(ed in ot#er studies, 8otentiall( obscuring relations#i8s obser&able in a sam8le %it# fe%er e?traneous sources of &ariance1 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&el1 Ginall(, 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 findings1 9#is stud( #as se&eral limitations1 .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&ers1 9#is %as a cross6sectional stud( t#at 8recludes dra%ing causal inferences1 Ase of Mualitati&e met#ods mig#t #a&e en#anced inter8retation of findings1 )e8lication of our findings regarding race or et#nicit( and stigma in larger sam8les is needed1 ;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 stabilized1 +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&ers1 $t t#e indi&idual le&el, a significant number of caregi&ers %ere recei&ing medication for emotional 8roblems1 ,e&el of functioning, sociocultural conte?t, and 8articular factors &ie%ed as stigmatizing 2for 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(1 ;n treatment for caregi&ers, im8ro&ing t#e Mualit( and Muantit( of social su88ort s#ould be a 8rimar( recommendation 2for e?am8le, t#e De8ression and .i8olar /u88ort $lliance41 D#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 8roblem1 $c"no%ledgments and disclosures 9#is stud( %as conducted %it# t#e su88ort of grants B016 *600001 and )016 *6E5015 from t#e Bational ;nstitute of ental *ealt#1 9#e aut#ors t#an" Gar( /1 /ac#s, 1D1, 9erence $1 'etter, 1D1 1D1, 1D1, and ic#ael :1 9#ase, 1D1, 8rinci8al 1D1, $ndre% $1 in&estigators for t#e /9:P6.D1 9#e /9:P6.D Gamil( :?8erience +ollaborati&e /tud( Grou8 consisted of Jose8# )1 +alabrese, Bierenberg, ar" Gosse(, 1D1, ,auren .1 arangell, 1D1, and Ja(endra Patel,

Dr1 .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 Da&is, /mit# 'line .eec#am, and /tanle( ental *ealt#, Par"e edical )esearc# Goundation! 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 Pfizer1 Dr1 +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 D(et# P#armaceuticals1 Dr1 -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 Pfizer1 9#e ot#er aut#ors re8ort no com8eting interests1 )eferences 11 ,in" .G, Jang ,*, P#elan J+, et al: 2005 21 P#elan J+, .romet :J, ,in" .G: Ps(c#iatric illness and famil( stigma1 /c#izo8#renia .ulletin 25:115612E, 10 December 2013 Page F of 12 ProQuest easuring mental illness stigma1 /c#izo8#renia .ulletin 30:5116551,

1FF0 31 P#illi8s ), Pearson <, ,i G, et al: /tigma and e?8ressed emotion: a stud( of 8eo8le %it# sc#izo8#renia and

t#eir famil( members in +#ina1 .ritis# Journal of Ps(c#iatr( 101:50065F3, 2002 51 /truening :,, Perlic" D$, ,in" .G, et al: /tigma as a barrier to reco&er(: t#e e?tent to %#ic# caregi&ers belie&e most 8eo8le de&alue consumers and t#eir families1 Ps(c#iatric /er&ices 52:1E3361E30, 2001 51 9#ara ), /rini&asan 9B: *o% stigmatising is sc#izo8#renia in ;ndiaP ;nternational Journal of /ocial Ps(c#iatr( 5E:1356151, 2000 E1 /#ibre 9, Begas# $, 'ullgren G, et al: Perce8tion of stigma among famil( members of indi&iduals %it# sc#izo8#renia and ma7or affecti&e disorders in rural :t#io8ia1 /ocial Ps(c#iatr( and Ps(c#iatric :8idemiolog( 3E:2FF6303, 2001 31 *or%itz $<, )ein#ard /+: :t#nic differences in caregi&ing duties and burdens among 8arents and siblings of 8ersons %it# se&ere mental illnesses1 Journal of *ealt# and /ocial .e#a&ior 3E:1306150, 1FF5 01 -stman , '7ellin ,: /tigma b( association: 8s(c#ological factors in relati&es of 8eo8le %it# mental illness1

.ritis# Journal of Ps(c#iatr( 101:5F565F0, 2002 F1 Greeman *:, .enson P), 9essler )+: $ttitudes to%ard mental illness among relati&es of former 8atients1 $merican /ociological )e&ie% 2E:5F6EE, 1FE1 101 Perlic" D$, )osen#ec" )), +lar"in JG, et al: ;m8act of famil( burden and 8atient s(m8tom status on clinical outcome in bi8olar affecti&e disorder1 Journal of Ber&ous and ental Disease 10F:31633, 2001

111 'ales *+, .lo% G+, .ing#am +), et al: )ace and in8atient 8s(c#iatric diagnoses among elderl( &eterans1 Ps(c#iatric /er&ices 51:3F56000, 2000 121 Guarnaccia PJ, Parra P: :t#nicit(, social status, and families= e?8eriences of caring for a mentall( ill famil( member1 +ommunit( ental *ealt# Journal 32:25362E0, 1FFE

131 Dal"u8 J, +ramer ,J, Jeras J: *o% is stigmatization affected b( t#e >la(ering> of stigmatized conditions, suc# as serious mental illness and *;<P Ps(c#ological )e8orts F5:331633F, 2005 151 /c#eff 9J: 9#e labelling t#eor( of mental illness1 $merican /ociological )e&ie% 3F:5556552, 1F35 151 ,in" .G, +ullen G9, /truening :,, et al: $ modified labeling t#eor( a88roac# to mental disorders: an em8irical assessment1 $merican /ociological )e&ie% 55:5006523, 1F0F 1E1 ,in" .G, /truening :,, )a#a& 30:13361F0, 1FF3 131 Perlic" D, )osen#ec" )$, i"lo%itz D, et al: Pre&alence and correlates of burden in caregi&ers of bi8olar , et al: -n stigma and its conseMuences: e&idence from a longitudinal stud(

of men %it# dual diagnoses of mental illness and substance abuse1 Journal of *ealt# and /ocial .e#a&ior

8atients1 .i8olar Disorders, in 8ress 101 /ac#s G/, 9#ase :, -tto D, et al: )ationale, design, and met#ods of t#e /(stematic 9reatment

:n#ancement Program for .i8olar Disorder 2/9:P6.D41 .iological Ps(c#iatr( 53:102061052, 2003 1F1 /ac#s G/: Ase of clonaze8am for bi8olar affecti&e disorder1 Journal of +linical Ps(c#iatr( 512su88l4:31635, 50653, 1FF0 201 Girst ., /8itzer ),, Gibbon , et al: /tructured +linical ;nter&ie% for D/ 6;< $?is ; Disorders, +linician

<ersion 2/+;D6+<41 Das#ington, D+, $merican Ps(c#iatric Press, 1FFE 211 /#ee#an D<, ,ecrubier J, /#ee#an '*, et al: 9#e 10 December 2013 ini6;nternational Beuro8s(c#iatric ;nter&ie% 2 ;B;4: t#e ProQuest

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de&elo8ment and &alidation of a structured diagnostic 8s(c#iatric inter&ie% for D/ 6;< and ;+D6101 Journal of +linical Ps(c#iatr( 5F2su88l 204:22633, 1FF0 221 ontgomer( /$, $sberg : $ ne% de8ression scale designed to be sensiti&e to c#ange1 .ritis# Journal of

Ps(c#iatr( 135:302630F, 1F3F 231 Joung )+, .iggs J9, Oiegler <:, et al: $ rating scale for mania: reliabilit(, &alidit(, and sensiti&it(1 .ritis# Journal of Ps(c#iatr( 133:52F6535, 1F30 251 Judd ,,, /c#ettler PJ, $"is"al */, et al: ,ong6term s(m8tomatic status of bi8olar ; &s bi8olar ;; disorders1 ;nternational Journal of Beuro8s(c#o8#armacolog( E:1236133, 2003 251 Goldberg JG, *arro% , Grossman ,/: )ecurrent affecti&e s(ndromes in bi8olar and uni8olar mood

disorders at follo%6u81 .ritis# Journal of Ps(c#iatr( 1EE:3026305, 1FF5 2E1 )adloff ,/: 9#e +:/6D scale: a self6re8ort de8ression scale for researc# in t#e general 8o8ulation1 $88lied Ps(c#ological easurement 1:3056501, 1F33 e?ican6$mericans

231 Golding J , $nes#ensel +/, *oug# ),: )es8onses to De8ression /cale items among and non6*is8anic %#ites1 Journal of +linical Ps(c#olog( 53:E1635, 1FF1

201 )oberts ):: )eliabilit( of t#e +:/6D /cale in different et#nic conte?ts1 Ps(c#iatr( )esearc# 2:1256135, 1F00 2F1 Platt /, De(man $, *irsc# /, et al: 9#e /ocial .e#a&ior $ssessment /c#edule 2/.$/4: rationale, contents, scoring and reliabilit( of a ne% inter&ie% sc#edule1 /ocial Ps(c#iatr( 15:53655, 1F30 301 Perlic" D, +lar"in JG, /ire( J, et al: .urden e?8erienced b( care6gi&ers of 8ersons %it# bi8olar affecti&e disorder1 .ritis# Journal of Ps(c#iatr( 135:5E6E2, 1FFF 311 'oenig *G, Destlund ):, George ,', et al: $bbre&iating t#e Du"e /ocial /u88ort ;nde? for use in c#ronicall( ill elderl( indi&iduals1 Ps(c#osomatics 35:E16EF, 1FF3 321 ,anderman ), George ,', +am8bell )9, et al: $lternati&e models of t#e stress buffering #(8ot#esis1 $merican Journal of +ommunit( Ps(c#olog( 13:E256E52, 1F0F 331 /truening :,, /tue&e $, <ine P, et al: Gactors associated %it# grief and de8ressi&e s(m8toms in caregi&ers of 8eo8le %it# serious mental illness1 )esearc# in +ommunit( ental *ealt# 0:F16125, 1FF5

9able 1: Descri8ti&e c#aracteristics of caregi&ers and t#eir friends or relati&es %it# bi8olar disorder 9able 2: .i&ariate anal(ses of correlates of mental illness stigma 8ercei&ed b( caregi&ers of 535 8ersons %it# bi8olar disorder, b( s(m8tom status 9able 3: ulti&ariate regression anal(sis of stigma score outcomes for caregi&ers of 8ersons %it# bi8olar

disorder %#o met criteria for an affecti&e e8isode for at least one6fourt# of t#e 8ast (ear 2un%ell grou84 9able 5: ulti&ariate regression anal(sis of stigma score outcomes for caregi&ers of 8ersons %it# bi8olar

disorder %#o %ere eut#(mic for at least t#ree6fourt#s of t#e 8ast (ear 2%ell grou84 AuthorAffiliation Dr1 Gonzalez, s1 *ernandez, and Dr1 .o%den are affiliated %it# t#e De8artment of Ps(c#iatr(, Ani&ersit( of ount /inai /c#ool of edicine, Be% Jor" +it(1 Dr1 i"lo%itz is

9e?as *ealt# /cience +enter, 3303 Glo(d +url Dr1, /an $ntonio, 9Q 3022F 2e6mail: gonzalez7m1Rut#scsa1edu41 Dr1 Perlic" is %it# t#e De8artment of Ps(c#iatr(, %it# t#e De8artment of Ps(c#olog(, Ani&ersit( of +olorado, .oulder1 Dr1 'acz(ns"i and Dr1 )osen#ec" are affiliated %it# t#e De8artment of Ps(c#iatr(, Jale Ani&ersit(, Be% *a&en, +onnecticut1 Dr1 +ul&er is %it# t#e De8artment of Ps(c#iatr( and .e#a&ioral /ciences, /tanford Ani&ersit(, Palo $lto, +alifornia1 Dr1 -stac#er is 10 December 2013 Page 11 of 12 ProQuest

%it# t#e De8artment of Ps(c#iatr(, *ar&ard

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Ps(c#olog(, /e&erit( of ;llness ;nde?, /ocial /u88ort, .i8olar Disorder 66 8s(c#olog( 2ma7or4, .i8olar Disorder 66 t#era8( 2ma7or4, +aregi&ers 66 8s(c#olog( 2ma7or4, +aregi&ers 66 statistics S numerical data 2ma7or4, De8ression 66 e8idemiolog( 2ma7or4, De8ression 66 8s(c#olog( 2ma7or4, *ealt# Promotion 2ma7or4, /tereot(8ing 2ma7or4 Corporate)institutional author$ /9:P6.D Gamil( :?8erience /tud( Grou8 Publication title$ Ps(c#iatric /er&ices *olume$ 50 Issue$ 1 Pages$ 5160 Publication #ear$ 2003 Publication date$ Jan 2003 +ear$ 2003 Publisher$ $merican Ps(c#iatric Publis#ing, ;nc1 Place of publication$ $rlington Countr# of publication$ Anited /tates Publication sub&ect$ *ealt# Gacilities $nd $dministration, ISS,$ 10352330 Source t#pe$ /c#olarl( Journals -anguage of publication$ :nglis# ocument t#pe$ Journal $rticle Accession number$ 13215511 ProQuest document I $ 21312EFFF ocument .R-$ #tt8:TTsearc#18roMuest1comTdoc&ie%T21312EFFFPaccountidL50E33 Cop#right$ +o8(rig#t $merican Ps(c#iatric Publis#ing, ;nc1 Jan 2003 -ast updated$ 201360260F atabase$ ProQuest edical ,ibrar(,ProQuest Ps(c#olog( Journals edical /ciences66Ps(c#iatr( $nd Beurolog(

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