P C Gronholm G Thornicroft K R Laurens and S Evans-Lacko

Mental health-related stigma and pathways to care for people at risk of psychotic disorders or experiencing first-episode psychosis a systematic review Article (Published version) (Refereed)

Original citation Gronholm P C Thornicroft G Laurens K R and Evans-Lacko S (2017) Mental health-related stigma and pathways to care for people at risk of psychotic disorders or experiencing first-episode psychosis a systematic review Psychological Medicine ISSN 0033-2917 DOI 101017S0033291717000344 Reuse of this item is permitted through licensing under the Creative Commons

copy 2017 Cambridge University Press CC BY 40 This version available at httpeprintslseacuk69907 Available in LSE Research Online March 2017

LSE has developed LSE Research Online so that users may access research output of the School Copyright copy and Moral Rights for the papers on this site are retained by the individual authors andor other copyright owners You may freely distribute the URL (httpeprintslseacuk) of the LSE Research Online website

Mental health-related stigma and pathways tocare for people at risk of psychotic disorders orexperiencing first-episode psychosis a systematicreview

P C Gronholm1 G Thornicroft123 K R Laurens4567 and S Evans-Lacko128

1Health Service and Population Research Department Institute of Psychiatry Psychology amp Neuroscience Kingrsquos College London London UK2Centre for Global Mental Health Institute of Psychiatry Psychology amp Neuroscience Kingrsquos College London London UK3Centre for Implementation Science Institute of Psychiatry Psychology amp Neuroscience Kingrsquos College London London UK4Department of Forensic and Neurodevelopmental Science Institute of Psychiatry Psychology amp Neuroscience Kingrsquos College London London UK5School of Psychiatry University of New South Wales Sydney New South Wales Australia6Schizophrenia Research Institute Sydney New South Wales Australia7Neuroscience Research Australia Sydney New South Wales Australia8Personal Social Services Research Unit London School of Economics and Political Science London UK

Background Stigma associated with mental illness can delay or prevent help-seeking and service contact Stigma-related influences on pathways to care in the early stages of psychotic disorders have not been systematically examined

Method This review systematically assessed findings from qualitative quantitative and mixed-methods research stud-ies on the relationship between stigma and pathways to care (ie processes associated with help-seeking and health ser-vice contact) among people experiencing first-episode psychosis or at clinically defined increased risk of developingpsychotic disorder Forty studies were identified through searches of electronic databases (CINAHL EMBASEMedline PsycINFO Sociological Abstracts) from 1996 to 2016 supplemented by reference searches and expert consulta-tions Data synthesis involved thematic analysis of qualitative findings narrative synthesis of quantitative findings and ameta-synthesis combining these results

Results The meta-synthesis identified six themes in relation to stigma on pathways to care among the target populationlsquosense of differencersquo lsquocharacterizing difference negativelyrsquo lsquonegative reactions (anticipated and experienced)rsquo lsquostrategiesrsquolsquolack of knowledge and understandingrsquo and lsquoservice-related factorsrsquo This synthesis constitutes a comprehensive over-view of the current evidence regarding stigma and pathways to care at early stages of psychotic disorders and illustratesthe complex manner in which stigma-related processes can influence help-seeking and service contact among first-epi-sode psychosis and at-risk groups

Conclusions Our findings can serve as a foundation for future research in the area and inform early intervention effortsand approaches to mitigate stigma-related concerns that currently influence recognition of early difficulties and contrib-ute to delayed help-seeking and access to care

Received 26 September 2016 Revised 18 January 2017 Accepted 24 January 2017

Key words Discrimination early intervention FEP healthcare-seeking behaviour healthcare utilization help-seekingbehaviour labelling literature review stigma treatment barriers

Introduction

Psychotic disorders can have a severe or long-termimpact (Tandon et al 2009) Although timely accessto treatment is associated with improved outcomes(Birchwood amp Macmillan 1993 McGorry et al 1996)

there is often considerable delay between initial onsetof psychotic symptoms and treatment initiation(Ho amp Andreasen 2001) Early intervention servicesaim to improve clinical and social outcomes throughreducing the duration of untreated psychosis (DUP)(Birchwood et al 1997 McGorry et al 2000) It is alsopossible to intervene preventatively prior to theonset of frank psychotic symptoms through strategiestargeting people at clinically defined increased risk ofdeveloping psychotic disorder (Kohler et al 2014)These early intervention efforts ndash whether targeting

Address for correspondence Dr P C Gronholm Health Serviceand Population Research Department (Box P029) Institute ofPsychiatry Psychology amp Neuroscience Kingrsquos College London DeCrespigny Park London SE5 8AF UK

(Email petragronholmkclacuk)

Psychological Medicine Page 1 of 13 copy Cambridge University Press 2017doi101017S0033291717000344

REVIEW ARTICLE

This is an Open Access article distributed under the terms of the Creative Commons Attribution licence (httpcreative-commonsorglicensesby40) which permits unrestricted re-use distribution and reproduction in any medium providedthe original work is properly cited

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first-episode psychosis (FEP) or clinical high-risk states ndashbuild on the premise of reduced service access delaysEmerging evidence supports the utility of these strat-egies (Preti amp Cella 2010 Stafford et al 2013 Castleamp Singh 2015)

To improve timely access to support greater under-standing of how to facilitate help-seeking and iden-tification of potential barriers in the processesunderpinning service contact is needed Stigma asso-ciated with mental illness is one such potential influ-ence Stigma has been defined as the co-occurrence ofprocesses reflecting labelling stereotyping separatingemotional reactions and status loss and discrimin-ation within a power context favouring the stigmatizer(Link et al 2004) These processes can operate in anumber of settings and are evident through variousdirect and indirect social interactions Different typesof stigma have been formulated to describe these vari-ous manifestations For example it is proposed thatstigma can be defined in terms of how its influence isexperienced or using an action-orientated perspectiveof who (or what) gives or receives the stigma(Pescosolido amp Martin 2015) Experiential types ofstigma include perceived stigma (considering beliefslsquomost peoplersquo are thought to hold) endorsed stigma(expressed agreement with stereotypesprejudicedis-crimination) anticipated stigma (expected experiencesof prejudicediscrimination) received stigma (overtexperiences of rejection or devaluation) or enactedstigma (discriminatory behaviours) Action-orientatedways of considering stigma recognize for examplepublic stigma (stereotypes prejudice and discriminationendorsed by the general population) structural stigma(prejudice and discrimination through laws policiesand constitutional practices) courtesy stigma (stereo-types prejudice and discrimination acquired throughan association with a stigmatized groupperson)provider-based stigma (prejudice and discrimination byoccupational groups designated to provide assistanceto stigmatized groups) and internalized stigma (whenpeople who belong to a stigmatized group legitimizepublicly held stereotypes and prejudice and internal-ize these by applying them to themselves) Peoplersquospreference to avoid stigma instigated by receiving amental illness diagnosis or through association withmental health services may delay or prevent help-seeking and service contact These influences havebeen explored in narrative reviews (Corrigan 2004Schomerus amp Angermeyer 2008 Thornicroft 2008)and one systematic review (Clement et al 2015) thatconsidered various populations and mental health con-ditions All reported evidence that stigma can consti-tute a barrier to help-seeking and service use

Stigma-related influences on pathways to care mightbe pertinent in relation to help-seeking and accessing

care for FEP or during at-risk states of psychotic disor-ders as psychosis is a highly stigmatized conditionboth in terms of its diagnosis and associated symptoms(Rose et al 2011 Yang et al 2013 Lasalvia et al 2014)To our knowledge there have been no systematicefforts to examine stigma in relation to help-seekingand service contact among these two specific popula-tions Improved understanding of these influencescould inform efforts to mitigate stigma-related barriersto help-seeking and service use in early stages ofpsychotic disorders

This review aimed to systematically assess findingsfrom qualitative quantitative and mixed-methodsresearch (MMR) studies examining the relationshipbetween stigma and pathways to care (term denotingprocesses associated with help-seeking and health ser-vice contact) The primary objective was to examinethis relationship among people experiencing FEP orat risk of a psychotic disorder and among significantother individuals supporting their pathways to care(eg through help-seeking assistance and initiating ser-vice contact) As secondary objectives the reviewexplored possible mechanisms through which stigmawas reported to influence pathways to care and howwell researched stigma was in relation to thesepathways

Method

As per recommendations for research questions whereboth qualitative and quantitative evidence is available(Oliver et al 2005 EPPI Centre 2010) this systematicmixed-studies review separately considered qualitativeand quantitative evidence before merging these dataThe review protocol was developed a priori and regis-tered at PROSPERO Centre for Reviews andDissemination (ID CRD42014009206) and followedthe Preferred Reporting Items for Systematic Reviewsand Meta-Analyses (PRISMA) statement (Moher et al2009) see online Supplement 1

Search strategy and selection of studies

Five electronic databases (CINAHL EMBASEMedline PsycINFO Sociological Abstracts) weresearched in July 2016 for papers published between1996 and 2016 Subject headings and keywords wererelated to the following terms at-risk statusFEPAND stigma AND help-seekingservice use (see onlineSupplement 2 for the full search strategies) Thesearches were limited to lsquohumanrsquo publications inEnglish and studies considering people aged up toand including 40 years Backward and forward refer-ence searches were carried out for all relevant papersidentified through the database searches and authors

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of these papers and other content experts were con-tacted for recommendations regarding additional pub-lications Initial result screening considered studiesrsquotitles abstracts and keywords To establish consistency15 of these results were independently screened bythe main author and a second rater and discrepanciesresolved via discussion Full-text reports were obtainedfor all potentially relevant studies Inclusion criteria(see Table 1) were data-based peer-reviewed articlesconcerning stigma in relation to pathways to careamong people at risk of developing a psychotic dis-order or experiencing FEP using qualitative quantita-tive or MMR approaches

Studies met the stigma inclusion criteria if thefindings were explicitly described as lsquostigmarsquo andalso if a study reported on processes (eg thoughtsbeliefs inter- or intrapersonal dynamics experiencedbehaviours) that were not explicitly defined using theterm lsquostigmarsquo but were reflective of the processesunderpinning stigma labelling stereotyping separat-ing emotional reactions and status loss and discrimin-ation within a power context favouring the stigmatizer(Link et al 2004)

Data extraction analysis and synthesis

Data were extracted on study design population char-acteristics and summary descriptions on stigma andpathways to care For qualitative studies relevantdata were participant quotes and authorsrsquo interpreta-tions and summaries regarding stigma in relation topathways to care as reported in study results sectionsFor quantitative studies details were extracted regard-ing how the study operationalized stigmadiscrimin-ation and pathways to care and data on theconnection between these (eg association betweenstigma and help-seeking variables prevalence ofstigma-related help-seeking barriers) For MMR stud-ies summary descriptions were extracted for qualita-tive and quantitative findings alongside details onhow these were related

Studiesrsquo methodological quality was assessed usingthe Mixed Methods Appraisal Tool (MMAT Pluyeet al 2011) The MMAT assesses two generic core qual-ity criteria and methodology-specific aspects thatinclude four quality dimensions for qualitative andquantitative designs and three dimensions for MMRdesigns Articles were assigned 1 point for each dimen-sion where criteria was met and half a point for par-tially met criteria These points were summed for anoverall score ranging from 0 (no criteria met) to100 (all criteria met)

Data synthesis was conducted in three stages Firstthematic analysis (Braun amp Clarke 2006) was under-taken to synthesize the findings of articles reporting

qualitative data Data were extracted verbatim fromthe articles and transferred into qualitative analysissoftware (NVivo 10 QSR International) An initial cod-ing frame was developed based on inductive open cod-ing Data were iteratively indexed and sorted withinthis and themes continuously related and restruc-tured until a thematic framework which accuratelyand comprehensively reflected the data emergedThis process was validated through consensus meet-ings between authors (PCG SE-L) Themes withinthe framework were connected if at least one articlereported a relationship between them

The second stage involved a narrative synthesis(Popay et al 2006) of the findings of the articles report-ing on quantitative data Synthesis involved assessingquantitative findings regarding stigma and pathwaysto care across studies and summarizing these withina textual narrative

The third stage involved a meta-synthesis to bringtogether the multi-level insights from the qualitativeand quantitative syntheses (Centre for Reviews andDissemination 2009) This approach juxtaposes ratherthan pools findings from the separate syntheses intoan overall picture reflecting commonalities also high-lighting differences where relevant (Pope et al 2007)An overarching conceptual meta-synthesis frame-work was produced by examining the quantitativesynthesis results in relation to the thematic frame-work derived from the qualitative synthesisSubthemes from the quantitative synthesis were inte-grated into the thematic model indicated usingunderlining This provided an overview of the over-all results while delineating the derivation of synthe-sis themes enabling comparing and contrastingthese findings

Additional analyses

Sensitivity analysis

To examine how the studiesrsquo methodological qualitymight have influenced the review findings articlesmeeting 450 of MMAT criteria were excludedfrom the meta-synthesis model to assess whether thischanged the results

Subgroup analyses

To further examine the association between stigmaand pathways to care subgroup comparisons wereplanned among (1) people at risk of developing psych-otic disorders v those experiencing FEP (2) peopleaffected by at-risk stages of psychotic disorders orFEP v significant other individuals and (3) significantother individuals of people at risk of developingpsychotic disorders v significant other individuals of

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Table 1 Inclusion and exclusion criteria for articles included in the systematic review

PopulationFirst-episode psychosis or at-risk

stages of psychosisInclude People experiencing first-episode psychosis or experiencing attenuated

psychotic-like symptoms below the threshold of frank psychotic symptomsbut indicative of an increased risk of developing schizophrenia and otherpsychotic disorders or people reporting an early illness presentationcharacterized by the presence of subclinical psychotic-like experiences(PLEs) People experiencing these difficulties aged up to and including 40years of age

Exclude People in at-risk stages based on a genetic or familial high risk for psychosis orschizophrenia or people experiencing chronic psychosis or disorders otherthan (early) psychotic disordersschizophrenia People over the age of 40 years

Domains studiedStigmaInclude Findings described as or reflective of any kind of stigma related to mental

health including experienced stigmas (perceived endorsed anticipatedreceived or enacted) or action-orientated stigmas (public stigma structuralstigma courtesy and internalized-stigma)

Exclude Stigmas relating to attributes other than mental health for example otherhealth conditions such as HIV gender sexuality nationality ethnic origin

Pathway to careInclude Processes of and features within help-seeking service contactuse or periods

of untreated illness prior toduring help-seeking or prior to service contactExclude Articles that consider pathways to care in association with mental health

problems which are not characterized as early of symptoms and signs ofpsychosis (including chronic psychosis or schizophrenia) substance abusedementia intellectual disabilities

Person reporting on pathwayto careInclude Articles where pathways to care are reported by either the person affected by

first-episodeearly psychosis or at-risk stages of psychosis or a significantother person assisting the individual or initiating service contact on behalfof the affected person

Exclude Articles where pathways to care are reported by other people not listedabove (eg formal service providers people acting within a professionalservice provider capacity)

Study typeArticles reporting on data-based peer-

reviewed qualitative quantitative or mixedmethods research studiesInclude Data-based peer-reviewed articles that use qualitative quantitative or

mixed methods research approaches to assess stigma in relation topathways to care within the population of interest

Exclude Non-data based or non-peer-reviewed articles for example reviewsresearch protocols editorials comments letters and dissertations

Other criteriaYear of publicationInclude Articles published between January 1996 and July 2016Exclude Articles published prior to 1996

LanguageInclude Articles published in EnglishExclude Articles not published in English

Type of researchInclude Articles identified using the lsquohumanrsquo search filterExclude Animal studies and any other type of research not included in the lsquohumanrsquo

search filter

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those experiencing FEP For these comparisons therelative proportions of articles reporting on stigma-related themes were compared across the subgroupsWe considered findings of articles where stigma-relatedthoughts and experiences were discussed as relatedpathways to care or where a statistically significantassociation was reported between measures reflectingstigma and pathways to care

Results

The search produced 8544 non-duplicated results ofwhich 8330 were excluded following initial screeningFull-text articles were accessed for the remaining 214references 171 articles were excluded following assess-ment against full eligibility criteria and three articleswere excluded later upon further inspection of meth-odological details Forty articles met review inclusioncriteria Fig 1 depicts this process full details on theincluded articles are provided in online Supplement3 and online Supplement 4 lists the excluded full-textarticles

Most included articles described qualitative studies(775 3140) fewer quantitative (175 740) andMMR (50 240) papers were included Three-quarters(775 3140) considered FEP populations Around halfof the studies (550 2240) considered the perspectiveof the affected person (ie person at risk of psychosisor experiencing FEP) just under a third the perspectiveof significant others (300 1240) and six (150) con-sidered a joint perspective of both When consideringthese core study characteristics jointly ndash populationand person describing pathway to care ndashmost often arti-cles considered the perspectives of people experiencingFEP (375 1540) followed by the perspectives ofsignificant others of people affected by FEP (3001240) and the perspectives of people in at-risk groups(225 940)

The methodological quality of the included qualita-tive studies was overall good MMAT ratings rangedfrom 375 to 1000 but nearly all met gt500 ofthe criteria (871 2731) The most common limita-tions were not providing information on people whodeclined participation and not discussing how resultsrelated to the research context or researcherrsquos influenceThe quality of the quantitative studies was mixedMMAT ratings ranged from 375 to 1000 with500 the modal rating (429 37) In quantitativestudies quality was compromised by limited reportingon response rates and sample representativeness TheMMR studies were of relatively poorer methodologicalquality with MMAT ratings of 00 and 375 (ratingreflects the weakest of qualitative quantitative andMMR-specific scores) Both studies were compromised

for example by limited critical consideration of integrat-ing qualitative and quantitative components

Qualitative synthesis

Thirty-three articles reported qualitative findings (n = 31qualitative studies n = 2 MMR) considering data from541 people Most articles considered FEP groups (8182733) four (121) considered clinically defined at-riskgroups and two (61) considered individuals at riskby virtue of experiencing auditory hallucinations thatwere distressing andor precipitants of health servicecontact Just over half (545 1833) considered theperspective of the affected person

Six themes and 23 subthemes describing stigmaand pathways to care among people experiencingFEP or at risk of psychosis were identified These themeswere lsquosense of differencersquo lsquocharacterizing differencesnegativelyrsquo lsquonegative reactions (anticipated and experi-enced)rsquo lsquostrategiesrsquo lsquolack of knowledge and understand-ingrsquo lsquoservice-related factorsrsquo A visual overview of thesethemes and their interconnections is provided in the con-ceptual model illustrated in Fig 2 which also reportstheir frequencies (number of studies)

The first theme described experiences of a lsquosense ofdifferencersquo in relation to people at early stages ofpsychotic disorders and the factors this differencewas attributed to This was captured in three sub-themes reflecting (i) a broad distinction of differencebased on the impression that something was wrongor not normal to difference described in terms ofboth (ii) a general conceptualization of mental illnessand (iii) more specific thoughts on particular diagnosesand descriptions of symptoms The second theme oflsquocharacterizing differences negativelyrsquo described howpeople considered different were often labelled withnegative meanings and qualities reflecting stereotypedbeliefs These characterizations were captured in threesubthemes reflecting (i) stigmatizing labels like madcrazy or mental and thoughts around a person being(ii) dangerous violent or unpredictable or (iii) stupidincapable or lazy The third theme on lsquonegative reac-tionsrsquo captured anticipated and experienced responsesndash both from others and oneself ndash in relation to the senseof difference and the associated labelling These weregrouped into six subthemes reflecting othersrsquo (i) nega-tive and judgemental reactions (ii) social distancing(iii) sense of stigma shame and embarrassment andalso personal feelings of (iv) shame and embarrass-ment (v) guilt and (vi) fear that experiences wouldworry or upset others The fourth theme on lsquostrategiesrsquocaptured peoplersquos attempts to avoid these reactionsFive subthemes described these efforts covering (i)non-disclosure (ii) concealment efforts (iii) denyingignoring not accepting or admitting the situation

Stigma and pathways to care in early stages of psychotic disorders 5

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(iv) normalizing and rationalizing experiences and (v)social withdrawal In terms of impact on pathways tocare the stigma-related experiences and beliefsdescribed in these four themes were reported to con-tribute to for example reluctance to recognize symp-toms delayed help-seeking due to withholdingdifficulties from informal sources of support and byinfluencing how people discussed approached orengaged with services The fifth theme lsquolack of knowl-edge and understandingrsquo described how stigma-related factors had contributed towards a limitedawareness and understanding of mental illnesswhich consequently also compromised appropriatehelp-seeking The sixth theme lsquoservice-related factorsrsquodescribed instances where deterring experiences ofstigma were directly attributed to the service contextcaptured in the subthemes (i) feeling labelled judgedand treated differently by service providers (ii) preju-diced attitudes towards and (fear of) mental health ser-vices and (iii) belief that services break families apart

However this theme also described facilitative experi-ences where aspects of services had contributed todiminished stigma captured in the subthemes (iv) nor-malizing destigmatizing peer-environment and (v)normalizing impact of treatment

Online Supplement 5 illustrates these themes andsubthemes further through participant quotes asreported in the articles considered for this synthesis

Quantitative synthesis

Nine articles reported on quantitative findings (n = 7quantitative studies n = 2 MMR) reflecting data from692 people Five (556) considered FEP populationsthree (333) groups defined through clinical high-riskcriteria and one (111) young people experiencingauditory hallucinations Most articles (556 59) con-sidered affected personsrsquo perspectives

Six articles examined multivariate and bivariateassociations between pathways to care and various

Fig 1 Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram summarizing the articleselection process used in the systematic review

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Fig 2 Conceptual model based on meta-synthesis of qualitative (n = 33) and quantitative (n = 9) results Boxes with solid outlines represent themes and subthemes The box with thedashed outline lists processes which were not explicitly linked to stigma but were related to a stigma-linked theme Numbers in parentheses indicate the number of studies in thequalitative synthesis and square brackets indicate the number of studies in the quantitative synthesis that reported a subtheme Underlined subthemes were reported in quantitativestudies only and dotted underlined subthemes were reported in both qualitative and quantitative studies Dashed arrows indicate connections between the themes heavy arrows indicatea link between a theme and pathways to care and crossed-out arrows indicate a non-significant association with a pathway to care-related outcome

Stigmaand

pathways

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stagesofpsychotic

disorders7

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conceptualizations of stigma perceived stigma(Compton amp Esterberg 2005 Compton et al 2009Ruumlsch et al 2013 Xu et al 2016) stigma stress (Ruumlschet al 2013 Xu et al 2016) stigmatized attitudes(Czuchta amp McCay 2001) and internalized stigma(Morrison et al 2013) The three additional articles con-sidered descriptive survey data on stigma-relatedexperiences (de Haan et al 2002 Kapur et al 2014Del Vecchio et al 2015)

To summarize the statistically significant findingsfrom the association studies an increase in perceivedstigma among people at risk of psychosis betweenbaseline and 1-year follow-up assessment was asso-ciated with more negative help-seeking attitudes forpsychotherapy at follow-up (Xu et al 2016) Lowerstigma stress among people at risk of psychosis wasassociated with more positive help-seeking attitudestowards both psychotherapy and psychiatric medica-tion at baseline (Ruumlsch et al 2013) whereas at 1-yearfollow up increased stigma stress since baseline wasassociated with more negative help-seeking attitudestowards psychotherapy only (Xu et al 2016) Peopleat risk of psychosis reported reduced internalizedstigma following cognitive therapy but so did thosewho did not receive therapy (Morrison et al 2013) Inquantitative descriptive studies service-stigma was areason for opposing psychiatric treatment among peo-ple with FEP and shame was the main reason for non-disclosure of symptoms (de Haan et al 2002) Concernthat loved ones experiencing FEP would be labelledlsquomadrsquo was a frequent reason for relatives not contact-ing psychiatric services (Del Vecchio et al 2015) andhealth professionals left young people who hear voicesfeeling lsquonot normalrsquo (Kapur et al 2014)

Overall meta-synthesis

The findings of the qualitative and quantitative resultssyntheses were combined in an overall meta-synthesisFig 2 illustrates the resulting conceptual modelOverall there was close coherence between the qualita-tive and quantitative evidence and quantitativefindings fitted within the themes emerging from thequalitative synthesis One contrasting finding was not-able between qualitative and quantitative studiesSubsequently based on quantitative findings onlythe subtheme lsquousing personal resources to cope withstress of stigmarsquo was added to the lsquostrategiesrsquo themeThis subtheme captured a strategy more reflective ofresilience and support ndash considering a personrsquos per-ceived social resources to overcome the harm of stigmandash whereas the qualitative findings described strategiessuch as concealing or rejecting the stigmatized condi-tion or distancing oneself from the situation inwhich stigma and discrimination occurred

Additional analyses

Sensitivity analysis

Eleven articles (n = 4 qualitative n = 5 quantitative n = 2MMR) with MMAT ratings of 450 were excludedfrom the meta-synthesis Subsequently no MMRpapers and only two quantitative papers remainedSubthemes added to the meta-synthesis model basedon quantitative findings alone were lost but all sub-themes based on the qualitative results synthesiswere retained as was the overall thematic structure ofthe meta-synthesis

Subgroup analyses

Findings regarding stigma and pathways to care wereexamined among (1) people at risk of developingpsychotic disorders v those experiencing FEP and(2) people affected by at-risk stages of psychotic disor-ders or FEP v significant other individuals The thirdcomparison planned between significant other indivi-duals of people at risk of developing psychotic disor-ders v significant other individuals of thoseexperiencing FEP was prevented by the absence ofstudies considering the former perspective The sub-group comparisons are summarized below onlineSupplement 6 details the relative proportions of arti-cles reporting on the themes and subthemes by sub-group classification

The first subgroup comparison considered 29 articlesfocusing on FEP populations and nine articles report-ing on at-risk groups The main themes lsquocharacterizingdifference negativelyrsquo lsquonegative reactionsrsquo and lsquostrat-egiesrsquo were reported in a similar manner across thesegroups In contrast findings reflecting lsquosense of differ-encersquo were reported more often among FEP popula-tions Within this theme however the subtheme lsquonotbeing normal something is wrongrsquo was reportedmore frequently among at-risk groups whereas thelsquomental illnessrsquo subtheme was more commonlyreported in FEP studies The lsquolack of knowledge andunderstandingrsquo theme was reported in three studiesonly but all considered FEP groups Consideringfindings regarding service-specific stigma deterringfactors were reported among a higher proportion ofFEP studies whereas facilitating features werereported among a higher proportion of articles consid-ering at-risk groups

The second subgroup comparison consideredtwenty-four articles reporting on findings from the per-spective of people experiencing FEP or at risk of psych-osis (lsquoaffected personsrsquo) v thirteen articles consideringsignificant othersrsquo views Findings reflecting lsquonegativereactionsrsquo and lsquostrategiesrsquo were reported in a similarmanner across these groups Findings reflecting

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lsquosense of differencersquo and lsquocharacterizing differencenegativelyrsquowere reported in a larger proportion of arti-cles considering affected personsrsquo perspectivesStigma-related lsquolack of knowledge and understandingrsquowas only reported by three studies none focused onaffected personsrsquo perspectives Regarding service-specific stigma deterring influences were reported incomparable manner across the groups but facilitatingstigma-reducing factors were only reported by articlesconsidering affected personsrsquo perspectives

Discussion

This is the first systematic review to examine stigma inrelation to pathways to care for people in early stagesof psychotic disorders (FEP populations and groupsat risk of psychotic disorder) providing a comprehen-sive overview of current evidence in this area

The primary review objective was to examine therelationship between stigma and pathways to careamong people experiencing FEP or at risk of develop-ing a psychotic disorder and among significant otherindividuals supporting their pathways to careAddressing this aim our synthesis identified sixthemes in relation to stigma related to pathways tocare among these groups lsquosense of differencersquo lsquocharac-terizing difference negativelyrsquo lsquonegative reactions(anticipated and experienced)rsquo lsquostrategiesrsquo lsquolack ofknowledge and understandingrsquo and lsquoservice-relatedfactorsrsquo The conceptual model illustrating thesethemes alludes to the complex relationships betweenstigma and pathways to care in terms of different pro-cesses through which the stigma-related influences canbe observed (reflected in the synthesis themes and sub-themes) how these relate to each other and their con-nections with help-seeking and service use (see Fig 2)Addressing the secondary objective of this reviewthese interconnections indicate potential mechanismsthrough which stigma can influence pathways tocare For example a sense of difference often led peo-ple to anticipate negative labelling and judgementalreactions from others Such outcomes were avoidedthrough strategies like denial or non-disclosurewhich could delay help-seeking Another secondaryobjective was to examine how well stigma isresearched in relation to pathways to care for FEPand at-risk populations Assessing the methodologicalquality of the included studies indicated that qualita-tive studies in this field were generally of good qualitywhereas the quality of quantitative and MMR studieswas mixed Quantitative studies were comprised byfor example limited reporting on response rates andsample representativeness and MMR studies by lim-ited consideration of data integration This indicates a

paucity of high-quality quantitative and MMR evi-dence in this area

Overall the majority of evidence considered for ourreview was qualitative with fewer quantitative stud-ies It was interesting to note some differences inthese sets of data Namely qualitative evidence con-sistently indicated that stigma-related factorsinfluenced processes associated with help-seekingand service contact both among FEP and at-riskgroups For example stigma was reported as con-stantly present in help-seeking narratives (Ferrariet al 2015) and impacting participantsrsquo beliefs and atti-tudes regardless of how knowledgeable families wereabout mental illness (Boydell et al 2013) Howeverwhen examining quantitative associations betweenstigma and pathways to care findings were often notstatistically significant (Czuchta amp McCay 2001Compton amp Esterberg 2005 Compton et al 2009Ruumlsch et al 2013 Xu et al 2016) This pattern mightreflect the challenge of quantitatively capturing theinfluence of stigma given how stigma is likely to beonly one of many factors influencing help-seekingand healthcare use (Dockery et al 2015) and its quanti-tatively assessed effect on help-seeking is small tomoderate (Clement et al 2015) Overall it mightbe challenging to assess complex stigma-relatedinfluences and experiences through quantitativemeans (Compton et al 2009) as the influence of stigmaon processes along pathways to care is likely to varybetween individuals and help-seeking contexts Suchcomplexity was alluded to among the quantitativestudies in our review it was suggested that stigmamight contribute to longer DUPs through leading togreater perceived barriers to help-seeking whichmight delay contact with mental health services(Compton amp Esterberg 2005) Likewise a more com-plete picture of stigma-related factors on help-seekingwas obtained through considering not only perceivedstigma but also resources to cope with it (Ruumlschet al 2013 Xu et al 2016) Qualitative approachesmight be better suited to capture nuanced context-and person-dependent variablity in relation to stigma(Link et al 2004 Clement et al 2015) which mayexplain why the majority of evidence identified forthis review was qualitative

The at times contradictory insights obtained fromqualitative and quantitative studies should not be con-sidered reflective of one method producing more validfindings than the other Rather some points of diver-gence should be expected between findings obtainedthrough these separate lines of inquiry as they areunderpinned by distinct epistemological paradigms[generally speaking a positivist or post-positivistframework for quantitative research and an interpreti-vist or constructivist tradition for qualitative research

Stigma and pathways to care in early stages of psychotic disorders 9

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(Sale et al 2002 Creswell 2014)] These approachesconsequently provide insights reflecting different per-spectives of a phenomena of interest (Whitley 2007Hasson-Ohayon et al 2015) This variability can be con-sidered a richness and an enhanced understanding ofa topic can be obtained through taking into accountthese differing perspectives (Creswell amp Plano Clarke2007 Creswell et al 2011) Mixed-methods approachescould facilitate this type of deeper multi-faceted com-prehensive understanding of the influences explored inthis review through explicitly contrasting and compar-ing overlaps and disparities in findings regardingstigma and pathways to care obtained through qualita-tive and quantitative means Only two MMR studieswere however identified for this review indicatingthat such evidence is currently lacking

Our review focusing on FEPat-risk states corrobo-rates the findings of past literature considering stigmaand mental illness more generally For example stigmais suggested to constitute a barrier to preventing men-tal illness through public stigma self-stigma andshame contributing to reluctance to recognize early ill-ness and avoidance of treatment (Corrigan 2004Ruumlsch amp Thornicroft 2014) comparable to influencesof stigma evident within our results synthesis It hasalso been suggested that stigma can compromise pre-vention efforts through contributing to poor symptomrecognition and knowledge about available treatments(Jorm et al 2005 Ruumlsch amp Thornicroft 2014) againcomparable to our findings There are also similaritiesbetween our findings on strategies to avoidstigma-related reactions and the findings of a recentsystematic review on stigma and help-seeking amongpsychosis non-psychosis and population samplesand a range of mental illnesses (Clement et al 2015)Clement and colleagues also reported that concernsaround not being normal were a common barrier tohelp-seeking among young people specifically corre-sponding with our findings These parallels indicatethat stigma can operate in a comparable manner inrelation to early stages of developing psychotic disor-ders as explored in our review as well as the morebroadly conceptualized populations with mental ill-ness and more chronic illness presentations examinedin past literature

Our subgroup comparisons provide further detailedinsights regarding what is known about stigma forgroups within this reviewrsquos target population Forexample in terms of a lsquosense of differencersquo that caninstigate stigma processes among at-risk groups thiswas commonly reported in terms of lsquonot being normalsomething is wrongrsquo whereas FEP groups more oftenreported this in relation to a more specific sense oflsquomental illnessrsquo Understanding these nuanced differ-ences may help disentangle whether particular

stigma-related factors are more relevant for certainsubgroups

These findings can inform efforts to mitigatestigma-related concerns that currently influence recogni-tion of early difficulties and contribute to delayed help-seeking and access to care For example stigma-relatedfears linked to a general lsquosense of differencersquo contributedto a reluctance to recognize signs of mental illness dis-close difficulties and seek help Consequently mentalhealth awareness efforts could focus on increasing theunderstanding of early signs of poor mental health Animproved awareness of how to interpret initial symp-toms ndashwhat they might reflect and how they can be sup-ported ndash could reduce help-seeking barriers relating toyoung peoplersquos fears of not being lsquonormalrsquo or feelinglsquoweirdrsquo when symptoms emerge

In addition to providing an evidence summary wealso identified gaps in the research on stigma and path-ways to care among the reviewrsquos target population Forexample the subgroup comparisons showed thatfacilitative destigmatizing features of services werereported more frequently among at-risk than FEPgroups Rather than indicating experiential differencesthis could reflect an increased interest in exploringpositive aspects of detecting and treating high-riskstates of psychotic illnesses given the debate ofwhether risks of stigmatization outweigh the benefitsof at-risk labelsservices (Corcoran et al 2010 Woodset al 2010 Yang et al 2010) and a lack of researchexploring this among FEP groups Further seeminglyno studies have examined stigma and pathways tocare among significant others of people in at-riskgroups Given the importance of caregivers and othersin young peoplersquos help-seeking (Logan amp King 2001)a more complete picture of stigma on early pathwaysto care could be achieved through understandingthese influences among people supporting help-seeking efforts among people in at-risk groups

Limitations

Our search strategy might not have captured all arti-cles relevant for this review and our choice of data-bases could have limited the search However weused a broad search strategy in multiple databases toavoid such issues Relevant work might also havebeen excluded through our inclusion only of pub-lished peer-reviewed papers restrictions necessary toachieve a feasible volume of results to screen Thequalitative data synthesis was primarily conductedby the main author (PCG) which could have biasedthe process However inclusion decisions and resultssynthesis were periodically discussed with anotherauthor (SE-L) and quotes from the included articlesillustrating the themes are provided for transparency

10 P C Gronholm et al

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in online Supplement 5 Quantitative results could besynthesized using only a narrative approach statisticalpooling was prevented by the studiesrsquo methodologicaland conceptual heterogeneity Also the included stud-ies were primarily conducted in high-income andWestern countries restricting the generalizability ofthe findings Stigma-related influences can be strongerfor people from certain cultural or ethnic backgroundsdue to culturally-linked beliefs and morals influencinginterpretations of mental illness (Yang et al 2007)Some studies in this review reported that peoplefrom given cultural or ethnic groups seemed particu-larly affected by stigma (eg Asian Pakistani familiesin UK setting Connor et al 2016) However therewere insufficient studies examining the role of cultureor ethnic origin to enable subgroup comparisonsAdditionally the findings of this review should be inter-preted in view of how other non-stigma-relatedinfluences are also likely to constitute barriers on path-ways to care (Dockery et al 2015) These barriers caninclude for example structuralsituational factors (egissues with service location timing or availability) finan-cial reasons (eg cost of services health insurance cover)low perceived service need perceived ineffectivenessof services or a preference to cope with a problemon their own (Kessler et al 2001 Andrade et al 2014)

Conclusions

The conceptual model that emerged from our resultssynthesis constitutes a comprehensive overview ofthe current qualitative and quantitative evidence-baseregarding stigma and pathways to care among FEPand at-risk groups illustrating the complex mannerin which stigma-related processes can influence help-seeking and service contact at early stages of psychoticdisorders By contrasting our findings with previousliterature we identified similarities in the influence ofstigma as observed in early stages of psychotic disor-ders v established mental illnesses These comparisonsadvance the understanding of the role of stigma onearly pathways to care in emerging psychosis The con-ceptual model derived from our findings can serve as afoundation for future research and efforts to mitigatethe deterring influences on stigma on help-seekingand service contact

Supplementary material

The supplementary material for this article can befound at httpsdoiorg101017S0033291717000344

Acknowledgements

PCG received funding support from the NationalInstitute for Health Research (NIHR) Mental Health

Biomedical Research Centre at South London andMaudsley NHS Foundation Trust and Kingrsquos CollegeLondon GT is supported by the NIHR under itsProgramme Grants for Applied Research scheme(Improving Mental Health Outcomes by ReducingStigma and Discrimination RP-PG-0606-1053) GT issupported by the National Institute for HealthResearch (NIHR) Collaboration for Leadership inApplied Health Research and Care South London atKingrsquos College London Foundation Trust GTacknowledges financial support from the Departmentof Health via the National Institute for HealthResearch (NIHR) Biomedical Research Centre andDementia Unit awarded to South London andMaudsley NHS Foundation Trust in partnership withKingrsquos College London and Kingrsquos College HospitalNHS Foundation Trust The views expressed in thispaper are those of the author(s) and not necessarilythose of the NHS the NIHR or the Department ofHealth GT is supported by the European UnionSeventh Framework Programme (FP72007ndash2013)Emerald project SE-L is funded by the EuropeanResearch Council under the European Unionrsquos SeventhFramework Programme (FP72007ndash2013)ERC grantagreement no 337673 KRL was supported by fundingfrom the Schizophrenia Research Institute Australiautilizing infrastructure funding from the New SouthWales (NSW) Ministry of Health The funders had norole in study design data collection and analysis andinterpretation writing of the manuscript or decision tosubmit it for publication We thank Gareth Hopkin forhis contribution as a second rater during article screen-ing and data extraction Nicolas Ruumlsch for his feedbackwhile developing the intended review procedures andthe authors of the included papers and other colleaguesfor their recommendations regarding additional publica-tions to consider for this review

Declaration of Interest

SE-L has received consulting fees from Lundbeckunrelated to this work

References

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Stigma and pathways to care in early stages of psychotic disorders 11

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Clement S Schauman O Graham T Maggioni SEvans-Lacko S Bezborodovs N Morgan C Ruumlsch NBrown JSL Thornicroft G (2015) What is the impact ofmental health-related stigma on help-seeking A systematicreview of quantitative and qualitative studies PsychologicalMedicine 45 11ndash27

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Corrigan PW (2004) How stigma interferes with mentalhealth care The American Psychologist 59 614ndash625

Creswell JW (2014) Research Design (International StudentEdition) Qualitative Quantitative and Mixed MethodsApproaches 4th edn SAGE Publications Thousand OaksCA US

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Creswell JW Plano Clarke VL (2007) Designing andConducting Mixed Methods Research Sage Publications LtdLondon UK

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de Haan L Peters B Dingemans P Wouters L Linszen D(2002) Attitudes of patients toward the first psychoticepisode and the start of treatment Schizophrenia Bulletin 28431ndash442

Del Vecchio V Luciano M Sampogna G De Rosa CGiacco D Tarricone I Catapano F Fiorillo A (2015) Therole of relatives in pathways to care of patients with a firstepisode of psychosis The International Journal of SocialPsychiatry 61 631ndash637

Dockery L Jeffery D Schauman O Williams P Farrelly SBonnington O Gabbidon J Lassman F Szmukler GThornicroft G Clement S (2015) Stigma- andnon-stigma-related treatment barriers to mental healthcarereported by service users and caregivers Psychiatry Research228 612ndash619

EPPI-Centre (2010) EPPI-Centre Methods for ConductingSystematic Reviews EPPI-Centre Social Science ResearchUnit Institute of Education University of London LondonUK (httpseppiioeacukcmsLinkClickaspxfileticket=hQBu8y4uVwI=amptabid=88) Accessed 17 March2014

Ferrari M Flora N Anderson KK Tuck A Archie S Kidd SMckenzie K (2015) The African Caribbean and European(ACE) Pathways to Care study a qualitative exploration ofsimilarities and differences between African-origin Caribbean-origin and European-origin groups in pathwaysto care for psychosis BMJ Open 5

Hasson-Ohayon I Roe D Yanos PT Lysaker PH (2015) Thetrees and the forest mixed methods in the assessment ofrecovery based interventionsrsquo processes and outcomes inmental health Journal of Mental Health 25 543ndash549

Ho B Andreasen NC (2001) Long delays in seekingtreatment for schizophrenia Lancet 357 5ndash7

Jorm AF Blewitt KA Griffiths KM Kitchener BA ParslowRA (2005) Mental health first aid responses of the publicresults from an Australian national survey BMC Psychiatry 5

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Lasalvia A Zoppei S Bonetto C Tosato S Zanatta GCristofalo D De Santi K Bertani M Bissoli S LazzarottoL Ceccato E Riolo R Marangon V Cremonese CBoggian I Tansella M Ruggeri M (2014) The role ofexperienced and anticipated discrimination in the lives ofpeople with first-episode psychosis Psychiatric Services 651ndash7

Link BG Yang LH Phelan JC Collins PY (2004) Measuringmental illness stigma Schizophrenia Bulletin 30 511ndash541

Logan D King C (2001) Parental facilitation of adolescentmental health service utilization a conceptual and

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empirical review Clinical Psychology Science and Practice 8319ndash333

McGorry PD Edwards J Mihalopoulos C Harrigan SMJackson HJ (1996) EPPIC an evolving system of earlydetection and optimal management Schizophrenia Bulletin22 305ndash326

McGorry PD Krstev H Harrigan S (2000) Early detectionand treatment delay implications for outcome in earlypsychosis Current Opinion in Psychiatry 13 37ndash43

Moher D Liberati A Tetzlaff J Altman DG (2009) Preferredreporting items for systematic reviews and meta-analyses thePRISMA statement Annals of Internal Medicine 151 264ndash269

Morrison AP Birchwood M Pyle M Flach C Stewart SLKByrne R Patterson P Jones PB Fowler D Gumley AIFrench P (2013) Impact of cognitive therapy on internalisedstigma in people with at-risk mental states British Journal ofPsychiatry 203 140ndash145

Oliver S Harden A Rees R Shepherd J Brunton G GarciaJ Oakley A (2005) An emerging framework for includingdifferent types of evidence in systematic reviews for publicpolicy Evaluation 11 428ndash446

Pescosolido BA Martin JK (2015) The stigma complexAnnual Review of Sociology 41 87ndash116

Pluye P Robert E Cargo M Bartlett G OrsquoCathain AGriffiths F Boardman F Gagnon MP Rosseau MC (2011)Proposal a mixed methods appraisal tool for systematicmixed studies reviews (httpmixedmethodsappraisaltoolpublicpbworkscom) Accessed 16 January 2014

Popay J Roberts H Sowden A Petticrew M Arai L RogersM Britten N Roen K Duffy S (2006) Guidance on theConduct of Narrative Synthesis in Systematic Reviews ESRCMethods Programme University of Lancaster LancasterUK (httpwwwlancasteracukshmresearchnssrresearchdisseminationpublicationsphp)

Pope C Mays N Popay J (2007) Synthesising Qualitative andQuantitative Health Evidence A Guide to Methods McGraw-Hill International Maidenhead Berkshire England

Preti A Cella M (2010) Randomized-controlled trials inpeople at ultra high risk of psychosis a review of treatmenteffectiveness Schizophrenia Research 123 30ndash36

Rose D Willis R Brohan E Sartorius N Villares CWahlbeck K Thornicroft G (2011) Reported stigma anddiscrimination by people with a diagnosis of schizophreniaEpidemiology and Psychiatric Sciences 20 193ndash204

Ruumlsch N Heekeren K Theodoridou A Dvorsky D MuumlllerM Paust T Corrigan PW Walitza S Roumlssler W (2013)

Attitudes towards help-seeking and stigma among youngpeople at risk for psychosis Psychiatry Research 2101313ndash1315

Ruumlsch N Thornicroft G (2014) Does stigma impairprevention of mental disorders British Journal of Psychiatry204 249ndash251

Sale JEM Lohfeld L Brazil K (2002) Revisiting thequantitative-qualitative debate implications formixed-methods research Quality and Quantity 36 43ndash53

Schomerus G Angermeyer MC (2008) Stigma and its impacton help-seeking for mental disorders what do we knowEpidemiologia e Psichiatria Sociale 17 31ndash37

Stafford MR Jackson H Mayo-Wilson E Morrison APKendall T (2013) Early interventions to prevent psychosissystematic review and meta-analysis British Medical Journal346 f185

Tandon R Nasrallah HA Keshavan MS (2009)Schizophrenia lsquojust the factsrsquo 4 Clinical features andconceptualization Schizophrenia Research 110 1ndash23

Thornicroft G (2008) Stigma and discrimination limit accessto mental health care Epidemiologia e Psichiatria Sociale 1714ndash19

Whitley R (2007) Mixed-methods studies Journal of MentalHealth 16 697ndash701

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Xu Z Muumlller M Heekeren K Theodoridou A Dvorsky DMetzler S Brabban A Corrigan PW Walitza S RoumlsslerW Ruumlsch N (2016) Self-labelling and stigma as predictorsof attitudes towards help-seeking among people at risk ofpsychosis 1-year follow-up European Archives of Psychiatryand Clinical Neuroscience 266 79ndash82

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Yang LH Wonpat-Borja AJ Opler MG Corcoran C (2010)Potential stigma associated with inclusion of the psychosisrisk syndrome in the DSM-V an empirical questionSchizophrenia Research 120 42ndash48

Stigma and pathways to care in early stages of psychotic disorders 13

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