Diagnostic labels: helpful or harmful?

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What’s in a name? That which we call a mental illness by any other name would be stigmatised as heavily; or would it? A new systematic review by Cliodhna O’Connor and colleagues explores the impact of a diagnostic label on social responses of others in vignette-based experimental studies.

The literature surrounding social responses to mental illness has increased significantly in the last two decades, namely the affective, cognitive, and behavioural responses that comprise stigma (Fox et al., 2018). Perhaps crucially so, as public stigma of mental illness persists, though efforts to diminish it, like Time to Change, have been somewhat effective (Angermeyer et al., 2013; Schomerus et al., 2012; Aileen O’Brien’s Mental Elf Blog; David Steele’s Mental Elf Blog; Suzanne Dash’s Mental Elf Blog). The role of labels in stigma development is crucial to understanding how to prevent or reduce it, though it has proved difficult to measure consistently (Thornicroft et al., 2016; Suzanne Dash’s Mental Elf Blog).

Vignette-based experimental designs can elicit robust responses with sufficient ecological validity while allowing for high levels of experimental control. The current study provided a systematic review of vignette-based experimental studies looking at labelling’s effects on perceptions of people with mental illness (O’Connor et al, 2021).

The impact of diagnostic labelling on social responses may vary across diagnoses and in different settings. This comprehensive systematic review synthesizes results of vignette-based studies looking at labelling effects.

The impact of diagnostic labelling on social responses may vary across diagnoses and in different settings. This comprehensive systematic review synthesizes results of vignette-based studies looking at labelling effects.

Methods

Investigators searched electronic databases for experimental written vignette studies that investigated diagnostic labels’ impact on various social perceptions (e.g., prejudice, desire for social distance, emotional response, attribution, helping behaviours). Studies had to involve human subject experiments with a control condition, and papers were written in English, peer reviewed, and published after 1995.

Included studies were evaluated for quality using the Joanna Briggs Institute Critical Appraisal Checklist for Quasi-Experimental Studies (Joanna Briggs Institute, n.d.) and given a score. Because of the heterogeneity of outcomes, study designs, and participant demographics, the authors decided to conduct a narrative systematic review rather than a meta-analysis.

Results

Twenty-two articles were included in the review. The studies largely recruited from convenience samples, college students, professionals, and only one utilised randomised sampling. The studies used a variety of outcome measures to determine social responses to vignettes, including a mix of already established (e.g., attribution scales and desire for social distance) and newly developed measures.

ADHD

Three studies investigating responses to children with or without an ADHD diagnosis demonstrated the label negatively impacted social appraisals (Law, et al., 2007; Batzle et al., 2010; Ohan et al., 2013), though one study did indicate that labels increased helping behaviour intentions among teachers (Ohan et al., 2011). Among college students, an ADHD label led to increased negative social responses in two studies (Canu et al., 2008; Thompson & Lefler, 2016) while a third (Jastrowski et al., 2007) indicated the opposite.

Schizophrenia spectrum disorders

Seven studies looked at labelling effects for schizophrenia spectrum disorders. Police officers’ perceptions of people with a schizophrenia diagnosis increased pity, helping behaviours, and perceived dangerousness (Watson et al., 2004). Healthcare providers reported more desire for social distance and increased stereotyping toward labeled groups (Mittal et al., 2014). Among the public, some studies noted that schizophrenia labels increased stigmatising attitudes and perceived controllability (Cheung et al., 2018; Matsunaga & Kitamura, 2016), while others found no difference in social responses (Abdullah & Brown, 2020; Cormack & Furnam, 1998).

Autism spectrum disorder

Across the six studies looking at ASD, effects of labelling were mixed, with some studies demonstrating that labels led to more positive responses from participants and reduced desire for social distance (Matthews et al., 2015; Brosnan & Mills, 2016; O’Connor, Burke, et al., 2020), whereas others found no significant effect (Bolton & Ault, 2018; Butler & Gillis, 2011).

Mood disorders

Five studies looked at depression and bipolar disorder. Diagnostic labelling of mood disorders can lead to more bleak assessments from hypothetical colleagues according to one study (Mendel et al., 2015), though its impact on desire for social distance was rather mixed (Abdullah & Brown, 2020; Cormack & Furnham, 1998; Ohan et al., 2013). Social responses to a bipolar disorder label, however, were generally more positive (Martinez et al., 2011).

Alcohol use disorders

Two studies found that labelling alcohol use disorder did not have significant impacts on desired social distance, but did increase causal attribution to one’s situation (Abdullah & Brown, 2020; Cormack & Furnham, 1998).

Anxiety disorders

Two studies looked at effects of agoraphobia and social anxiety disorder labels. Anxiety disorder labels did not have significant impacts on desired social distance, prognosis, or perceived severity, but did impact participants’ perceptions of cause (Abdullah & Brown, 2020; Cormack & Furnham, 1998).

While labels may increase helping behavior intentions toward some groups like those with autism, schizophrenia spectrum disorders, and ADHD, labels worsened social responses for those with mood disorders.

The evidence in this review suggested that labels may increase helping behaviour intentions toward some groups (e.g. autism, schizophrenia, ADHD), but also suggested that labels may worsen social responses for those with mood disorders.

Conclusions

  • The authors concluded that the varied trends in the impact of labelling across diagnoses emphasises the nuance of social responses to specific labels, though much previous research on stigma and labelling has used more broad terms like “mental illness.”
  • Furthermore, the conceptualisation and measurement of social responses is quite varied across the included studies, making comparisons between and within labels rather difficult.
  • Finally, the authors considered the importance of understanding how and why stigma may arise in response to various mental health labels, how that impacts disclosure decisioning for people with mental illness, and the pros and cons of recent calls to change or get rid of diagnostic labelling altogether.
Social responses to mental health labels varied both across and within diagnostic groups.

Social responses to mental health labels varied both across and within diagnostic groups.

Strengths and limitations

The authors provided a thoughtful and comprehensive review on an important subject for understanding and combatting stigma of mental health labels—stigma that can have deleterious effects on those who carry the label. The study met the standards set forth by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and was pre-registered on the Open Science Framework. Initial article identification was extensive, and inter-rater agreement on relevant articles to include was high. Also, the included studies were robust in their quality scores. Despite the mixed findings within and across mental health diagnoses, the content was well-organised, and the reviewers gave crucial context to the results.

The authors were conscientious of the review’s limitations, including the overrepresentation of Western countries, variety of outcome measures and study designs, limitations of written vignettes, use of measures with unreported or low validity, and the exclusion of unpublished works and studies published in languages other than English, which is likely to have excluded valuable findings from the review.

In addition, studies investigating labelling effects of substance use disorder may be argued as distinct from mental health diagnoses—the literature on the stigma of substance use disorders is less robust than that of other mental illness, but there exist marked differences between the two (Nieweglowski et al., 2018; Nieweglowski et al., 2019). Finally, while excluding studies that used audio-visual vignettes from the current review was a methodologically sound choice, it may be an important area for future reviews given its increased utilisation and improved ecological validity compared to written vignettes.

Limitations of the study include the exclusion of audio-visual vignettes.

Limitations of the study include the exclusion of audio-visual vignettes.

Implications for practice

Understanding the effects of diagnostic labels is essential in not only addressing stigma but also in helping people with mental health conditions make disclosure decisions. Furthermore, as the authors describe, stigma against people with mental illness persists not just within interpersonal responses but is perpetuated by systems, organisations, and policies.

Clinicians and researchers who have influence to assign or even reimagine diagnostic labels should consider the effects these labels may have on both individual clients/patients and within these broader structures (e.g., medical care, employment and housing opportunities, education). Because of the implications of diagnostic labels, many are advocating for alternative schemas for classifying experiences, including:

  • the Hierarchical Taxonomy of Psychopathology (Conway et al., 2019), which sorts psychopathology into various spectra, sub-factors, then more specific signs, symptoms, and components,
  • and the Power Threat Meaning Framework (Johnstone et al., 2018; Paul Salkovskis & Jo Edge’s Mental Elf Blog), which reframes categories of symptoms through the lens of systemic power and subsequent response patterns.

However, both people with mental health conditions and providers have noted the potential value of diagnostic labels for empowerment, understanding, and continuity of care, which should not be ignored (O’Connor et al., 2018; Perkins et al., 2018).

Clearly, labels play a significant role in mental health stigma and should be carefully considered when trying to reduce stigma and improve well-being for people with mental health conditions.

The role of labelling in stigma development should be considered within broader contexts of social structures that perpetuate stigma’s harms.

The role of labelling in stigma development should be considered within broader contexts of social structures that perpetuate stigma’s harms.

Statement of interests

While I am not connected with any of the study authors, nor do I have connection with the current publication, I work under the advisement of Dr. Patrick Corrigan, who is a co-author on two of the studies included in the systematic review.

Links

Primary paper

O’Connor C, Brassil M, O’Sullivan S, Seery C, and Nearchou F. (2021) How does diagnostic labelling affect social responses to people with mental illness? A systematic review of experimental studies using vignette-based designs. Journal of Mental Health 2021;1-16.

Other references

Abdullah T, Brown TL. (2020) Diagnostic labeling and mental illness stigma among Black Americans: An experimental vignette study. Stigma and Health 2020 5(1) 11–21.

Angermeyer, M. C., Matschinger, H., & Schomerus, G. (2013). Attitudes towards psychiatric treatment and people with mental illness: changes over two decadesThe British Journal of Psychiatry203(2), 146-151.

Batzle CS, Weyandt LL, Janusis GM, & DeVietti TL. (2010) Potential impact of ADHD with stimulant medication label on teacher expectations. Journal of Attention Disorders 2010 14(2) 157–166.

Bolton MJ, Ault LK. (2018) Disclosure of diagnosis increases positivity of social responses to autistic individuals. Psi Chi Journal of Psychological Research 2018 23(2) 110–118.

Brosnan M, Mills E. (2016) The effect of diagnostic labels on the affective responses of college students towards peers with ‘Asperger’s Syndrome’ and ‘Autism Spectrum Disorder. Autism 2016 20(4) 388–394.

Butler RC, & Gillis JM. (2011) The impact of labels and behaviors on the stigmatization of adults with Asperger’s disorder. Journal of Autism and Developmental Disorders 2011 41(6) 741–749.

Canu WH, Newman ML, Morrow TL, & Pope DLW. (2008) Social appraisal of adult ADHD stigma and influences of the beholder’s big five personality traits. Journal of Attention Disorders 2008 11(6) 700–710.

Cheung RYM, Mak WWS, Tsang PS, & Lau JTF. (2018) Stigma of psychosis: do diagnostic label, symptom manifestation, and gender matter? American Journal of Orthopsychiatry 2018 88(5) 529–537.

Conway, C. C., Forbes, M. K., Forbush, K. T., Fried, E. I., Hallquist, M. N., Kotov, R., … & Eaton, N. R. (2019). A hierarchical taxonomy of psychopathology can transform mental health research. Perspectives on Psychological Science 2019 14(3) 419-436.

Cormack S, Furnham A. (1998). Psychiatric labelling, sex role stereotypes and beliefs about the mentally ill. The International Journal of Social Psychiatry 1998 44(4) 235–247.

Dash S. Tackling mental-health-related stigma: a narrative review of anti-stigma interventions. The Mental Elf, 13 Apr 2016.

Fox AB, Earnshaw VA, Taverna EC, & Vogt D. (2018) Conceptualizing and measuring mental illness stigma: The mental illness stigma framework and critical review of measures. Stigma and Health 2018 3(4) 348–376.

Jastrowski KE, Berlin KS, Sato AF, & Davies WH. (2007) Disclosure of attention-deficit/hyperactivity disorder may minimize risk of social rejection. Psychiatry 2007 70(3) 274–282.

Johnstone L, Boyle M, with Cromby J, Dillon J, Harper D, Kinderman P, Longden E, Pilgrim D, Read J. (2018) The Power Threat Meaning Framework: Towards the identification of patterns in emotional distress, unusual experiences and troubled or troubling behaviour, as an alternative to functional psychiatric diagnosis (PDF). Leicester: British Psychological Society.

Law GU, Sinclair S, & Fraser N. (2007) Children’s attitudes and behavioural intentions towards a peer with symptoms of ADHD: Does the addition of a diagnostic label make a difference? Journal of Child Health Care 2007 11(2) 98–111.

Matsunaga A, Kitamura, T. (2016) The effects of symptoms, diagnostic labels, and education in psychiatry on the stigmatization towards schizophrenia: A questionnaire survey among a lay population in Japan. Mental Illness 2016 8(6344) 16–20.

Matthews NL, Ly AR, Goldberg WA. (2015) College students’ perceptions of peers with autism spectrum disorder. Journal of Autism and Developmental Disorders 2015 45(1) 90–99.

Martinez AG, Piff PK, Mendoza-Denton R, & Hinshaw SP. (2011) The power of a label: Mental illness diagnoses, ascribed humanity, and social rejection. Journal of Social and Clinical Psychology 2011 30(1) 1–23.

Mendel R, Kissling W, Reichhart T, Buhner M, Hamann J. (2015) Managers’ reactions towards employees’ disclosure of psychiatric or somatic diagnoses. Epidemiology and Psychiatric Sciences 2015 24(2) 146–149.

Mittal D, Corrigan P, Sherman MD, Chekuri L, Han X, Reaves C, Mukherjee S, Morris S, & Sullivan G. (2014) Healthcare providers’ attitudes toward persons with schizophrenia. Psychiatric Rehabilitation Journal 2014 37(4) 297–303.

Nieweglowski K, Corrigan PW. et al (2018) Exploring the public stigma of substance use disorder through community-based participatory research. Addiction Research & Theory 2018 26(4) 323-329.

Nieweglowski K, Dubke R. et al (2019). Understanding the factor structure of the public stigma of substance use disorder. Addiction Research & Theory 2019 27(2) 156-161.

O’Brien A. Has Time to Change made it time to talk? The Mental Elf, 1 Nov 2017.

O’Connor C, Burke J, Rooney B. (2020) Diagnostic disclosure and social marginalisation of adults with ASD: Is there a relationship and what mediates it? Journal of Autism & Developmental Disorders 2020 50 3367–3379.

Ohan JL, Visser TAW, Moss RG, & Allen NB. (2013) Parents’ stigmatizing attitudes toward psychiatric labels for ADHD and depression. Psychiatric Services 2013 64(12) 1270–1273.

Ohan JL, Visser TAW, Strain MC, & Allen L. (2011) Teachers’ and education students’ perceptions of and reactions to children with and without the diagnostic label “ADHD”. Journal of School Psychology 2011 49(1) 81–105.

Salkovskis P, Edge J. Power Threat Meaning Framework: innovative and important? #PTMFramework. The Mental Elf, 2 May 2018.

Schomerus, G., Schwahn, C., Holzinger, A., Corrigan, P. W., Grabe, H. J., Carta, M. G., & Angermeyer, M. C. (2012). Evolution of public attitudes about mental illness: A systematic review and meta‐analysisActa Psychiatrica Scandinavica125(6), 440-452.

Steele D. How can we reduce mental health stigma and discrimination? The Mental Elf, 10 Dec 2015.

Thompson A C, & Lefler EK. (2016) ADHD stigma among college students. Attention Deficit and Hyperactivity Disorders 2016 8(1) 45–52.

Thornicroft G, Mehta N, Clement S, Evans-Lacko S, Doherty M, Rose D, Koschorke M, Shidhaye R, O’Reilly C, Henderson C. (2016) Evidence for effective interventions to reduce mental-health-related stigma and discrimination. Lancet 2016 387(10023) 1123-32.

Watson AC, Corrigan PW, & Ottati V. (2004) Police officers’ attitudes toward and decisions about persons with mental illness. Psychiatric Services 2004 55(1) 49–53.

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