Mental health-related stigma and pathways to care for people at risk of psychotic disorders or experiencing first-episode psychosis: a systematic review
Open accessAbstract
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 studies on the relationship between stigma and pathways to care (i.e. processes associated with help-seeking and health service contact) among people experiencing first-episode psychosis or at clinically defined increased risk of developing psychotic disorder. Forty studies were identified through searches of electronic databases (CINAHL, EMBASE, Medline, PsycINFO, Sociological Abstracts) from 1996 to 2016, supplemented by reference searches and expert consultations. Data synthesis involved thematic analysis of qualitative findings, narrative synthesis of quantitative findings, and a meta-synthesis combining these results. Results: The meta-synthesis identified six themes in relation to stigma on pathways to care among the target population: ‘sense of difference’, ‘characterizing difference negatively’, ‘negative reactions (anticipated and experienced)’, ‘strategies’, ‘lack of knowledge and understanding’, and ‘service-related factors’. This synthesis constitutes a comprehensive overview of the current evidence regarding stigma and pathways to care at early stages of psychotic disorders, and illustrates the complex manner in which stigma-related processes can influence help-seeking and service contact among first-episode psychosis and at-risk groups. Conclusions: Our findings can serve as a foundation for future research in the area, and inform early intervention efforts and approaches to mitigate stigma-related concerns that currently influence recognition of early difficulties and contribute to delayed help-seeking and access to care.
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TL;DR
This systematic mixed-studies review synthesized 40 studies on mental health-related stigma and pathways to care among people at risk of psychotic disorders or experiencing first-episode psychosis (FEP). It identified six themes showing how stigma-related processes can delay help-seeking and service contact, though quantitative associations were often not statistically significant.
Key findings
- From 8,544 non-duplicated records, 40 studies met inclusion: 31/40 (77.5%) qualitative, 7/40 (17.5%) quantitative, and 2/40 (5.0%) mixed-methods; 31/40 (77.5%) considered FEP populations.
- Qualitative synthesis (33 articles; 541 people) yielded six themes: ‘sense of difference’, ‘characterizing difference negatively’, ‘negative reactions (anticipated and experienced)’, ‘strategies’, ‘lack of knowledge and understanding’, and ‘service-related factors’.
- Quantitative synthesis (9 articles; 692 people) found some significant associations: increased perceived stigma among at-risk people from baseline to 1-year follow-up was associated with more negative help-seeking attitudes for psychotherapy at follow-up; lower baseline stigma stress was associated with more positive help-seeking attitudes toward psychotherapy and psychiatric medication, while increased stigma stress at 1 year was associated with more negative attitudes toward psychotherapy only.
- However, quantitative associations between stigma and pathways to care were often not statistically significant; descriptive findings included service-stigma as a reason for opposing psychiatric treatment in FEP, shame as the main reason for non-disclosure, and relatives’ concern about loved ones being labelled ‘mad’ as a frequent reason for not contacting psychiatric services.
Methods
- Systematic mixed-studies review registered at PROSPERO (CRD42014009206) and reported per PRISMA; five databases (CINAHL, EMBASE, Medline, PsycINFO, Sociological Abstracts) were searched in July 2016 for 1996–2016 English, human studies of people aged ≤40 years.
- Inclusion required data-based, peer-reviewed qualitative, quantitative, or mixed-methods studies assessing stigma in relation to pathways to care among people at risk of psychotic disorder or experiencing FEP; 40 studies were included.
- Synthesis used thematic analysis of qualitative findings, narrative synthesis of quantitative findings, and a meta-synthesis combining them; methodological quality was assessed with the Mixed Methods Appraisal Tool (MMAT), with planned sensitivity and subgroup analyses.
Limitations
- Stated by the authors: the search may not have captured all relevant articles and database choice may have limited it; only published peer-reviewed papers were included; qualitative synthesis was primarily conducted by the main author; quantitative results could only be narratively synthesized due to methodological/conceptual heterogeneity; studies were primarily from high-income/Western countries, limiting generalizability; insufficient studies examined culture/ethnicity; and non-stigma barriers also affect pathways to care.
- Evident from the text: the evidence base is heavily qualitative (31/40, 77.5%), with few quantitative (7/40) and mixed-methods (2/40) studies; MMR studies had poor MMAT ratings (0.0% and 37.5%), and the planned subgroup comparison for significant others of at-risk individuals was prevented by absence of studies.
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- Findingcitation
At 1-year follow up, increased stigma stress since baseline was associated with more negative help-seeking attitudes towards psychotherapy only among people at risk of psychosis.
“Lower stigma stress among people at risk of psychosis was associated with more positive help-seeking attitudes towards both psychotherapy and psychiatric medication at baseline (Rüsch et al. 2013), whereas at 1-year follow up increased stigma stress since baseline was associated with more negative help-seeking attitudes towards psychotherapy only (Xu et al. 2016).”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Xu et al. 2016
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- Findingcitation
Service-stigma was a reason for opposing psychiatric treatment among people with FEP.
“In quantitative descriptive studies, service-stigma was a reason for opposing psychiatric treatment among people with FEP, and shame was the main reason for nondisclosure of symptoms (de Haan et al. 2002).”
Quote in the paperSubstantial claim0 of 1 sources checked- cites de Haan et al. 2002
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- Findingown data
Considering findings regarding service-specific stigma, facilitating features were reported among a higher proportion of articles considering at-risk groups.
“Considering findings regarding service-specific stigma, deterring factors were reported among a higher proportion of FEP studies, whereas facilitating features were reported among a higher proportion of articles considering at-risk groups.”
Quote in the paperSubstantial claim - Findingown data
Findings reflecting 'sense of difference' were reported more often among FEP populations than at-risk groups.
“In contrast, findings reflecting 'sense of difference' were reported more often among FEP populations.”
Quote in the paperNot a substantial claim - Findingown data
The meta-synthesis identified six themes in relation to stigma on pathways to care among people at risk of psychotic disorders or experiencing first-episode psychosis: 'sense of difference', 'characterizing difference negatively', 'negative reactions (anticipated and experienced)', 'strategies', 'lack of knowledge and understanding', and 'service-related factors'.
“The meta-synthesis identified six themes in relation to stigma on pathways to care among the target population: 'sense of difference', 'characterizing difference negatively', 'negative reactions (anticipated and experienced)', 'strategies', 'lack of knowledge and understanding', and 'service-related factors'.”
- Also stated in: § Qualitative synthesis · plain
“Six themes and 23 subthemes describing stigma and pathways to care among people experiencing FEP or at risk of psychosis were identified.These themes were: 'sense of difference', 'characterizing differences negatively', 'negative reactions (anticipated and experienced)', 'strategies', 'lack of knowledge and understanding', 'service-related factors'.”
Quote in the paperSubstantial claim - Also stated in: § Qualitative synthesis · plain
- Findingown data
Both MMR studies were compromised by limited critical consideration of integrating qualitative and quantitative components.
“Both studies were compromised, for example, by limited critical consideration of integrating qualitative and quantitative components.”
Quote in the paperNot a substantial claim - Findingown data
Only two mixed-methods research studies were identified for this review.
“Only two MMR studies were, however, identified for this review, indicating that such evidence is currently lacking.”
Quote in the paperSubstantial claim - Findingreasoning
The insights obtained from qualitative and quantitative studies were at times contradictory.
“The, at times, contradictory insights obtained from qualitative and quantitative studies should not be considered reflective of one method producing more valid findings than the other.”
Quote in the paperSubstantial claim - Findingown data
Considering findings regarding service-specific stigma, deterring factors were reported among a higher proportion of FEP studies.
“Considering findings regarding service-specific stigma, deterring factors were reported among a higher proportion of FEP studies, whereas facilitating features were reported among a higher proportion of articles considering at-risk groups.”
Quote in the paperSubstantial claim - Findingcitation
A more complete picture of stigma-related factors on help-seeking was obtained through considering not only perceived stigma, but also resources to cope with it.
“Likewise, a more complete picture of stigma-related factors on help-seeking was obtained through considering not only perceived stigma, but also resources to cope with it (Rüsch et al. 2013;Xu et al. 2016).”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites Rüsch et al. 2013
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- cites Xu et al. 2016
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- Findingcitation
When examining quantitative associations between stigma and pathways to care, findings were often not statistically significant.
“However, when examining quantitative associations between stigma and pathways to care, findings were often not statistically significant (Czuchta & McCay, 2001;Compton & Esterberg, 2005;Compton et al. 2009;Rüsch et al. 2013;Xu et al. 2016).”
Quote in the paperSubstantial claim0 of 3 sources checked- cites Czuchta & McCay, 2001
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- cites Compton & Esterberg, 2005
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- cites Compton et al. 2009
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- Findingcitation
Concern that loved ones experiencing FEP would be labelled 'mad' was a frequent reason for relatives not contacting psychiatric services.
“Concern that loved ones experiencing FEP would be labelled 'mad' was a frequent reason for relatives not contacting psychiatric services (Del Vecchio et al. 2015), and health professionals left young people who hear voices feeling 'not normal' (Kapur et al. 2014).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Del Vecchio et al. 2015
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- Findingcitation
Stigma was reported as constantly present in help-seeking narratives.
“stigma was reported as constantly present in help-seeking narratives (Ferrari et al. 2015)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Ferrari et al. 2015
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- Findingcitation
Lower stigma stress among people at risk of psychosis was associated with more positive help-seeking attitudes towards both psychotherapy and psychiatric medication at baseline.
“Lower stigma stress among people at risk of psychosis was associated with more positive help-seeking attitudes towards both psychotherapy and psychiatric medication at baseline (Rüsch et al. 2013), whereas at 1-year follow up increased stigma stress since baseline was associated with more negative help-seeking attitudes towards psychotherapy only (Xu et al. 2016).”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Rüsch et al. 2013
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- Findingown data
Within the 'sense of difference' theme, the subtheme 'not being normal, something is wrong' was reported more frequently among at-risk groups.
“Within this theme, however, the subtheme 'not being normal, something is wrong' was reported more frequently among at-risk groups, whereas the 'mental illness' subtheme was more commonly reported in FEP studies.”
Quote in the paperNot a substantial claim - Findingown data
The 'lack of knowledge and understanding' theme described how stigma-related factors contributed towards limited awareness and understanding of mental illness, which consequently compromised appropriate help-seeking.
“The fifth theme, 'lack of knowledge and understanding', described how stigmarelated factors had contributed towards a limited awareness and understanding of mental illness, which consequently also compromised appropriate help-seeking.”
Quote in the paperSubstantial claim - Findingcitation
Shame was the main reason for non-disclosure of symptoms among people with FEP.
“In quantitative descriptive studies, service-stigma was a reason for opposing psychiatric treatment among people with FEP, and shame was the main reason for nondisclosure of symptoms (de Haan et al. 2002).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites de Haan et al. 2002
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- Findingown data
Facilitating stigma-reducing factors were only reported by articles considering affected persons' perspectives.
“Regarding servicespecific stigma, deterring influences were reported in comparable manner across the groups, but facilitating stigma-reducing factors were only reported by articles considering affected persons' perspectives.”
Quote in the paperNot a substantial claim - Findingown data
Within the 'sense of difference' theme, the 'mental illness' subtheme was more commonly reported in FEP studies.
“Within this theme, however, the subtheme 'not being normal, something is wrong' was reported more frequently among at-risk groups, whereas the 'mental illness' subtheme was more commonly reported in FEP studies.”
Quote in the paperNot a substantial claim - Findingown data
Findings reflecting 'characterizing difference negatively' were reported in a larger proportion of articles considering affected persons' perspectives than significant others.
“Findings reflecting 'sense of difference' and 'characterizing difference negatively' were reported in a larger proportion of articles considering affected persons' perspectives.”
Quote in the paperNot a substantial claim - Findingown data
In the second subgroup comparison, findings reflecting 'negative reactions' and 'strategies' were reported in a similar manner across affected persons and significant others.
“Findings reflecting 'negative reactions' and 'strategies' were reported in a similar manner across these groups.”
Quote in the paperNot a substantial claim - Findingcitation
There are similarities between our findings on strategies to avoid stigma-related reactions and the findings of a recent systematic review on stigma and help-seeking among psychosis, non-psychosis and population samples, and a range of mental illnesses.
“There are also similarities between our findings on strategies to avoid stigma-related reactions, and the findings of a recent systematic review on stigma and help-seeking among psychosis, non-psychosis and population samples, and a range of mental illnesses (Clement et al. 2015).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Clement et al. 2015
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- Findingown data
In the first subgroup comparison, the main themes 'characterizing difference negatively', 'negative reactions', and 'strategies' were reported in a similar manner across FEP and at-risk groups.
“The first subgroup comparison considered 29 articles focusing on FEP populations and nine articles reporting on at-risk groups.The main themes 'characterizing difference negatively', 'negative reactions', and 'strategies' were reported in a similar manner across these groups.”
Quote in the paperNot a substantial claim - Findingown data
Regarding service-specific stigma, deterring influences were reported in comparable manner across affected persons and significant others.
“Regarding servicespecific stigma, deterring influences were reported in comparable manner across the groups, but facilitating stigma-reducing factors were only reported by articles considering affected persons' perspectives.”
Quote in the paperNot a substantial claim - Findingcitation
Qualitative evidence consistently indicated that stigma-related factors influenced processes associated with help-seeking and service contact both among FEP and at-risk groups.
“Namely, qualitative evidence consistently indicated that stigma-related factors influenced processes associated with help-seeking and service contact both among FEP and at-risk groups.”
Quote in the paperSubstantial claim - Findingown data
Findings reflecting 'sense of difference' were reported in a larger proportion of articles considering affected persons' perspectives than significant others.
“Findings reflecting 'sense of difference' and 'characterizing difference negatively' were reported in a larger proportion of articles considering affected persons' perspectives.”
Quote in the paperNot a substantial claim - Findingcitation
An increase in perceived stigma among people at risk of psychosis between baseline and 1-year follow-up assessment was associated with more negative help-seeking attitudes for psychotherapy at follow-up.
“To summarize the statistically significant findings from the association studies, an increase in perceived stigma among people at risk of psychosis between baseline and 1-year follow-up assessment was associated with more negative help-seeking attitudes for psychotherapy at follow-up (Xu et al. 2016).”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Xu et al. 2016
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- Findingown data
Six themes and 23 subthemes describing stigma and pathways to care among people experiencing FEP or at risk of psychosis were identified.
“Six themes and 23 subthemes describing stigma and pathways to care among people experiencing FEP or at risk of psychosis were identified.”
Quote in the paperSubstantial claim - Findingown data
In quantitative studies, quality was compromised by limited reporting on response rates and sample representativeness.
“In quantitative studies, quality was compromised by limited reporting on response rates and sample representativeness.”
Quote in the paperNot a substantial claim - Findingown data
The 'strategies' theme captured people's attempts to avoid negative reactions, covering non-disclosure, concealment efforts, denying, ignoring, not accepting or admitting the situation, normalizing and rationalizing experiences, and social withdrawal.
“The fourth theme on 'strategies' captured people's attempts to avoid these reactions.Five subthemes described these efforts, covering (i) non-disclosure, (ii) concealment efforts, (iii) denying, ignoring, not accepting or admitting the situation, (iv) normalizing and rationalizing experiences, and (v) social withdrawal.”
Quote in the paperSubstantial claim - Findingnone given
The majority of evidence considered for this review was qualitative, with fewer quantitative studies.
“Overall, the majority of evidence considered for our review was qualitative, with fewer quantitative studies.”
Quote in the paperSubstantial claim - Findingcitation
Health professionals left young people who hear voices feeling 'not normal'.
“Concern that loved ones experiencing FEP would be labelled 'mad' was a frequent reason for relatives not contacting psychiatric services (Del Vecchio et al. 2015), and health professionals left young people who hear voices feeling 'not normal' (Kapur et al. 2014).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Kapur et al. 2014
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- Findingown data
The 'service-related factors' theme also described facilitative experiences where aspects of services contributed to diminished stigma, captured in normalizing, destigmatizing peer-environment, and normalizing impact of treatment.
“However, this theme also described facilitative experiences where aspects of services had contributed to diminished stigma, captured in the subthemes (iv) normalizing, destigmatizing peer-environment, and (v) normalizing impact of treatment.”
Quote in the paperNot a substantial claim - Findingcitation
Stigma impacted participants' beliefs and attitudes regardless of how knowledgeable families were about mental illness.
“impacting participants' beliefs and attitudes regardless of how knowledgeable families were about mental illness (Boydell et al. 2013)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Boydell et al. 2013
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- Findingown data
There were insufficient studies examining the role of culture or ethnic origin to enable subgroup comparisons.
“However, there were insufficient studies examining the role of culture or ethnic origin to enable subgroup comparisons.”
Quote in the paperNot a substantial claim - Findingown data
The subgroup comparisons showed that facilitative destigmatizing features of services were reported more frequently among at-risk than FEP groups.
“For example, the subgroup comparisons showed that facilitative destigmatizing features of services were reported more frequently among at-risk than FEP groups.”
Quote in the paperSubstantial claim - Findingnone given
Seemingly no studies have examined stigma and pathways to care among significant others of people in at-risk groups.
“Further, seemingly no studies have examined stigma and pathways to care among significant others of people in at-risk groups.”
Quote in the paperNot a substantial claim - Findingcitation
Some studies in this review reported that people from given cultural or ethnic groups seemed particularly affected by stigma (e.g. Asian Pakistani families in UK setting).
“Some studies in this review reported that people from given cultural or ethnic groups seemed particularly affected by stigma (e.g.Asian Pakistani families in UK setting; Connor et al. 2016).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Connor et al. 2016
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- Findingreasoning
Stigma-related fears linked to a general 'sense of difference' contributed to a reluctance to recognize signs of mental illness, disclose difficulties, and seek help.
“For example, stigma-related fears linked to a general 'sense of difference' contributed to a reluctance to recognize signs of mental illness, disclose difficulties, and seek help.”
Quote in the paperSubstantial claim - Findingreasoning
By contrasting our findings with previous literature, we identified similarities in the influence of stigma as observed in early stages of psychotic disorders v. established mental illnesses.
“By contrasting our findings with previous literature, we identified similarities in the influence of stigma as observed in early stages of psychotic disorders v. established mental illnesses.”
Quote in the paperSubstantial claim - Premisecitation
Stigma is suggested to constitute a barrier to preventing mental illness through public stigma, self-stigma, and shame contributing to reluctance to recognize early illness and avoidance of treatment.
“stigma is suggested to constitute a barrier to preventing mental illness through public stigma, self-stigma, and shame contributing to reluctance to recognize early illness and avoidance of treatment (Corrigan, 2004;Rüsch & Thornicroft, 2014)”
Quote in the paperSubstantial claim0 of 2 sources checked- cites Corrigan, 2004
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- cites Rüsch & Thornicroft, 2014
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- Interpretationown data
Mixed-methods evidence on stigma and pathways to care is currently lacking.
“indicating that such evidence is currently lacking.”
Quote in the paperSubstantial claim - Interpretationreasoning
Our review, focusing on FEP/at-risk states, corroborates the findings of past literature considering stigma and mental illness more generally.
“Our review, focusing on FEP/at-risk states, corroborates the findings of past literature considering stigma and mental illness more generally.”
Quote in the paperNot a substantial claim - Interpretationcitation
Some points of divergence should be expected between findings obtained through qualitative and quantitative lines of inquiry, as they are underpinned by distinct epistemological paradigms.
“Rather, some points of divergence should be expected between findings obtained through these separate lines of inquiry, as they are underpinned by distinct epistemological paradigms [generally speaking, a positivist or post-positivist framework for quantitative research, and an interpretivist or constructivist tradition for qualitative research (Sale et al. 2002;Creswell, 2014)].”
Quote in the paperSubstantial claim0 of 2 sources checked- cites Sale et al. 2002
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- cites Creswell, 2014
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- Premisecitation
The quantitatively assessed effect of stigma on help-seeking is small to moderate.
“its quantitatively assessed effect on help-seeking is small to moderate (Clement et al. 2015)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Clement et al. 2015
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- Premisecitation
Stigma is likely to be only one of many factors influencing help-seeking and healthcare use.
“stigma is likely to be only one of many factors influencing help-seeking and healthcare use (Dockery et al. 2015)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Dockery et al. 2015
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- Interpretationcitation
The pattern of non-significant quantitative associations might reflect the challenge of quantitatively capturing the influence of stigma.
“This pattern might reflect the challenge of quantitatively capturing the influence of stigma, given how stigma is likely to be only one of many factors influencing help-seeking and healthcare use (Dockery et al. 2015) and its quantitatively assessed effect on help-seeking is small to moderate (Clement et al. 2015).”
Quote in the paperSubstantial claim0 of 2 sources checked- cites Dockery et al. 2015
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- cites Clement et al. 2015
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- Interpretationcitation
It might be challenging to assess complex stigma-related influences and experiences through quantitative means.
“Overall, it might be challenging to assess complex stigma-related influences and experiences through quantitative means (Compton et al. 2009), as the influence of stigma on processes along pathways to care is likely to vary between individuals and help-seeking contexts.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Compton et al. 2009
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- Interpretationreasoning
The influence of stigma on processes along pathways to care is likely to vary between individuals and help-seeking contexts.
“as the influence of stigma on processes along pathways to care is likely to vary between individuals and help-seeking contexts.”
Quote in the paperSubstantial claim - Interpretationreasoning
These parallels indicate that stigma can operate in a comparable manner in relation to early stages of developing psychotic disorders as well as the more broadly conceptualized populations with mental illness and more chronic illness presentations examined in past literature.
“These parallels indicate that stigma can operate in a comparable manner in relation to early stages of developing psychotic disorders, as explored in our review, as well as the more broadly conceptualized populations with mental illness and more chronic illness presentations examined in past literature.”
Quote in the paperSubstantial claim - Premisecitation
Clement and colleagues reported that concerns around not being normal were a common barrier to help-seeking among young people specifically.
“Clement and colleagues also reported that concerns around not being normal were a common barrier to help-seeking among young people specifically, corresponding with our findings.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Clement et al. 2015
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- May combine two claims. 21
- Classified as probably not a substantial claim. 18
May combine two claims.
FindingcitationPeople at risk of psychosis reported reduced internalized stigma following cognitive therapy, but so did those who did not receive therapy.
“People at risk of psychosis reported reduced internalized stigma following cognitive therapy, but so did those who did not receive therapy (Morrison et al. 2013).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Morrison et al. 2013
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Probably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataBased on quantitative findings only, the subtheme 'using personal resources to cope with stress of stigma' was added to the 'strategies' theme.
“Subsequently, based on quantitative findings only, the subtheme 'using personal resources to cope with stress of stigma' was added to the 'strategies' theme.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe methodological quality of the included qualitative studies was overall good; MMAT ratings ranged from 37.5% to 100.0%, but nearly all met >50.0% of the criteria (87.1%, 27/31).
“The methodological quality of the included qualitative studies was overall good; MMAT ratings ranged from 37.5% to 100.0%, but nearly all met >50.0% of the criteria (87.1%, 27/31).”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Findingown dataThe 'negative reactions' theme captured anticipated and experienced responses from others and oneself in relation to the sense of difference and associated labelling, grouped into others' negative and judgemental reactions, social distancing, sense of stigma, shame and embarrassment; and personal feelings of shame and embarrassment, guilt, and fear that experiences would worry or upset others.
“The third theme on 'negative reactions' captured anticipated and experienced responses both from others and oneselfin relation to the sense of difference and the associated labelling.These were grouped into six subthemes, reflecting others' (i) negative and judgemental reactions, (ii) social distancing, (iii) sense of stigma, shame and embarrassment; and also personal feelings of (iv) shame and”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataOverall there was close coherence between the qualitative and quantitative evidence, and quantitative findings fitted within the themes emerging from the qualitative synthesis.
“Overall there was close coherence between the qualitative and quantitative evidence, and quantitative findings fitted within the themes emerging from the qualitative synthesis.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataThe MMR studies were of relatively poorer methodological quality, with MMAT ratings of 0.0% and 37.5%.
“The MMR studies were of relatively poorer methodological quality, with MMAT ratings of 0.0% and 37.5% (rating reflects the weakest of qualitative, quantitative and MMR-specific scores).”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe quality of the quantitative studies was mixed; MMAT ratings ranged from 37.5% to 100.0%, with 50.0% the modal rating (42.9%, 3/7).
“The quality of the quantitative studies was mixed; MMAT ratings ranged from 37.5% to 100.0%, with 50.0% the modal rating (42.9%, 3/7).”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe most common limitations of the included qualitative studies were not providing information on people who declined participation, and not discussing how results related to the research context or researcher's influence.
“The most common limitations were not providing information on people who declined participation, and not discussing how results related to the research context or researcher's influence.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataThe 'service-related factors' theme described instances where deterring experiences of stigma were directly attributed to the service context, captured in feeling labelled, judged and treated differently by service providers; prejudiced attitudes towards and fear of mental health services; and belief that services break families apart.
“The sixth theme, 'service-related factors', described instances where deterring experiences of stigma were directly attributed to the service context, captured in the subthemes (i) feeling labelled, judged and treated differently by service providers; (ii) prejudiced attitudes towards and (fear of) mental health services; and (iii) belief that services break families apart.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe 'lack of knowledge and understanding' theme was reported in three studies only, but all considered FEP groups.
“The 'lack of knowledge and understanding' theme was reported in three studies only, but all considered FEP groups.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataStigma-related 'lack of knowledge and understanding' was only reported by three studies; none focused on affected persons' perspectives.
“Stigma-related 'lack of knowledge and understanding' was only reported by three studies; none focused on affected persons' perspectives.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe stigma-related experiences and beliefs described in the first four themes were reported to contribute to reluctance to recognize symptoms, delayed help-seeking due to withholding difficulties from informal sources of support, and influencing how people discussed, approached or engaged with services.
“In terms of impact on pathways to care, the stigma-related experiences and beliefs described in these four themes were reported to contribute to, for example, reluctance to recognize symptoms, delayed help-seeking due to withholding difficulties from informal sources of support, and by influencing how people discussed, approached or engaged with services.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataAmong at-risk groups, a 'sense of difference' that can instigate stigma processes was commonly reported in terms of 'not being normal, something is wrong' whereas FEP groups more often reported this in relation to a more specific sense of 'mental illness'.
“For example, in terms of a 'sense of difference' that can instigate stigma processes, among at-risk groups this was commonly reported in terms of 'not being normal, something is wrong' whereas FEP groups more often reported this in relation to a more specific sense of 'mental illness'.”
Quote in the paperSubstantial claimClassified as probably not a substantial claim.
Findingown dataThe conceptual model is based on meta-synthesis of qualitative (n = 33) and quantitative (n = 9) results.
“Conceptual model based on meta-synthesis of qualitative (n = 33) and quantitative (n = 9) results.”
Quote in the paperSubstantial claimClassified as probably not a substantial claim.
PremisecitationQualitative and quantitative approaches provide insights reflecting different perspectives of a phenomena of interest.
“These approaches consequently provide insights reflecting different perspectives of a phenomena of interest (Whitley, 2007;Hasson-Ohayon et al. 2015).”
Quote in the paperSubstantial claim0 of 2 sources checked- cites Whitley, 2007
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- cites Hasson-Ohayon et al. 2015
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InterpretationcitationQualitative approaches might be better suited to capture nuanced context and person-dependent variability in relation to stigma.
“Qualitative approaches might be better suited to capture nuanced contextand person-dependent variablity in relation to stigma (Link et al. 2004;Clement et al. 2015), which may explain why the majority of evidence identified for this review was qualitative.”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites Link et al. 2004
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- cites Clement et al. 2015
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InterpretationcitationStigma might contribute to longer DUPs through leading to greater perceived barriers to help-seeking, which might delay contact with mental health services.
“it was suggested that stigma might contribute to longer DUPs through leading to greater perceived barriers to help-seeking, which might delay contact with mental health services (Compton & Esterberg, 2005).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Compton & Esterberg, 2005
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PremisecitationStigma can compromise prevention efforts through contributing to poor symptom recognition and knowledge about available treatments.
“It has also been suggested that stigma can compromise prevention efforts through contributing to poor symptom recognition and knowledge about available treatments (Jorm et al. 2005;Rüsch & Thornicroft, 2014)”
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- cites Rüsch & Thornicroft, 2014
Not checked in the free run.
Classified as probably not a substantial claim.
PremisecitationQualitative and quantitative research are underpinned by distinct epistemological paradigms: generally a positivist or post-positivist framework for quantitative research, and an interpretivist or constructivist tradition for qualitative research.
“generally speaking, a positivist or post-positivist framework for quantitative research, and an interpretivist or constructivist tradition for qualitative research (Sale et al. 2002;Creswell, 2014)”
Quote in the paperSubstantial claim0 of 2 sources checked- cites Sale et al. 2002
Not checked in the free run.
- cites Creswell, 2014
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductnone givenOur search strategy might not have captured all articles relevant for this review, and our choice of databases could have limited the search.
“Our search strategy might not have captured all articles relevant for this review, and our choice of databases could have limited the search.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductnone givenInclusion decisions and results synthesis were periodically discussed with another author (S.E-L.), and quotes from the included articles illustrating the themes are provided for transparency in online Supplement 5.
“However, inclusion decisions and results synthesis were periodically discussed with another author (S.E-L.), and quotes from the included articles illustrating the themes are provided for transparency in online Supplement 5.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductreasoningWe used a broad search strategy in multiple databases to avoid such issues.
“However, we used a broad search strategy in multiple databases to avoid such issues.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable).
InterpretationreasoningThese comparisons advance the understanding of the role of stigma on early pathways to care in emerging psychosis.
“These comparisons advance the understanding of the role of stigma on early pathways to care in emerging psychosis.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductnone givenThe funders had no role in study design, data collection and analysis and interpretation, writing of the manuscript or decision to submit it for publication.
“The funders had no role in study design, data collection and analysis and interpretation, writing of the manuscript or decision to submit it for publication.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductnone givenThe qualitative data synthesis was primarily conducted by the main author (P.C.G.), which could have biased the process.
“The qualitative data synthesis was primarily conducted by the main author (P.C.G.), which could have biased the process.”
Quote in the paperNot a substantial claimMay combine two claims.
Study design and conductnone givenThe included studies were primarily conducted in high-income and Western countries, restricting the generalizability of the findings.
“Also, the included studies were primarily conducted in high-income and Western countries, restricting the generalizability of the findings.”
Quote in the paperNot a substantial claimMay combine two claims.
Study design and conductreasoningQuantitative results could be synthesized using only a narrative approach; statistical pooling was prevented by the studies' methodological and conceptual heterogeneity.
“Quantitative results could be synthesized using only a narrative approach; statistical pooling was prevented by the studies' methodological and conceptual heterogeneity.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
InterpretationcitationThe findings of this review should be interpreted in view of how other, non-stigma-related influences are also likely to constitute barriers on pathways to care.
“Additionally, the findings of this review should be interpreted in view of how other, non-stigma-related influences are also likely to constitute barriers on pathways to care (Dockery et al. 2015).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Dockery et al. 2015
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationStigma-related influences can be stronger for people from certain cultural or ethnic backgrounds, due to culturally-linked beliefs and morals influencing interpretations of mental illness.
“Stigma-related influences can be stronger for people from certain cultural or ethnic backgrounds, due to culturally-linked beliefs and morals influencing interpretations of mental illness (Yang et al. 2007).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Yang et al. 2007
Not checked in the free run.
May combine two claims.
PremisecitationNon-stigma-related barriers to care can include structural/situational factors, financial reasons, low perceived service need, perceived ineffectiveness of services, or a preference to cope with a problem on their own.
“These barriers can include, for example, structural/situational factors (e.g.issues with service location, timing or availability), financial reasons (e.g.cost of services, health insurance cover), low perceived service need, perceived ineffectiveness of services, or a preference to cope with a problem on their own (Kessler et al. 2001;Andrade et al. 2014).”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites Kessler et al. 2001
Not checked in the free run.
- cites Andrade et al. 2014
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductreasoningRelevant work might also have been excluded through our inclusion only of published, peer-reviewed papers; restrictions necessary to achieve a feasible volume of results to screen.
“Relevant work might also have been excluded through our inclusion only of published, peer-reviewed papers; restrictions necessary to achieve a feasible volume of results to screen.”
Quote in the paperNot a substantial claim
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Detrimental stigma outcomes in young people are mostly related to their need to preserve social identity and social capital.
“Detrimental stigma outcomes in young people were mostly related to their need to preserve social identity and social capital.87,88”
From The Lancet Commission on ending stigma and discrimination in mental health (2022) · cites this paper as [88]
Stigma represents a major barrier to initial contact with mental health services for young individuals.
“stigma represents a major barrier in this regards [19]”
From Prevention and early intervention in youth mental health: is it time for a multidisciplinary and trans-diagnostic model for care? (2020) · cites this paper as [19]
Young individuals, especially male, socioeconomically disadvantaged, and of ethnic minority, are less likely to establish initial contact with mental health services.
“young individuals, especially male, socioeconomically disadvantaged, and of ethnic minority, are less likely to establish initial contact with mental health services”
From Prevention and early intervention in youth mental health: is it time for a multidisciplinary and trans-diagnostic model for care? (2020) · cites this paper as [19]
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Cited by
Sorted by citations
The Lancet Commission on ending stigma and discrimination in mental health
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Perceived and experienced stigma in first-episode psychosis: A 1-year follow-up study
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Why do some Mexicans with psychosis risk symptoms seek mental health care and others do not?
Domínguez, T., Puebla, D. P., Fresán, A., Sheinbaum, T., Nieto, L., Robles, R., López, S. R., de la Fuente-Sandoval, C., Lara Muñoz, M. D. C., Barrantes-Vidal, N., et al. (2024) · Psychiatry Research · doi:10.1016/j.psychres.2024.116199 · Cited by 1 · see citing works
- Authors
- Gronholm, P. C., Thornicroft, G., Laurens, K. R., & Evans-Lacko, S.
- Affiliations
- King's College London (GB)
- Corresponding author
- Gronholm, P. C.
- Venue
- Psychological Medicine
- Publisher
- Cambridge University Press (CUP)
- Published
- 2017-02-15
- Volume
- 47
- Issue
- 11
- Pages
- 1867-1879
- ISSN
- 0033-2917 (ISSN-L)
- 1469-8978
- OpenAlex
- W2589011515
- Semantic Scholar
- 53ef7b239d417aab6a7ac51a702551a313635baf
- Cited by
- 181
- References
- 53
- Citations by year
- 2026: 9 · 2025: 26 · 2024: 29 · 2023: 16 · 2022: 23 · 2021: 18 · 2020: 14 · 2019: 15 · 2018: 21 · 2017: 10
- FWCI
- 2.53
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Psychological Medicine (publishedVersion, cc-by)
- PubMed (publishedVersion)
- London School of Economics and Political Science Research Online (London School of Economics and Political Science) (acceptedVersion)
- QUT ePrints (Queensland University of Technology) (submittedVersion, cc-by)
- UNSWorks (University of New South Wales, Sydney, Australia) (submittedVersion, cc-by-nc-nd)
- Research Portal (King's College London) (submittedVersion, cc-by)
- Funders
- South London and Maudsley NHS Foundation Trust
- King's College Hospital NHS Foundation Trust
- National Institute for Health and Care Research (RP-PG-0606-1053, FP7/2007–2013, NF-SI-0611-10053)
- King's College London
- European Commission (2007–2013, FP7 2007-2013, FP7/2007)
- Programme Grants for Applied Research
- FP7 Ideas: European Research Council (337673)
- Topics
- Social Sciences › Psychology › Social Psychology › Mental Health Treatment and Access
- Health Sciences › Medicine › Psychiatry and Mental health › Schizophrenia research and treatment
- Social Sciences › Psychology › Clinical Psychology › Psychology and Mental Health
- Keywords
- mental health stigma, pathways to care, first-episode psychosis, help-seeking, help-seeking barriers, early intervention, service contact, help-seeking delay
- MeSH terms
- Humans, Patient Acceptance of Health Care, Psychotic Disorders, Social Stigma
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-10-07.
Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-07.
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