3.2.1 Wanting to be ‘normal’. One theme that occurred across three of the four papers was around wanting to be ‘normal’ and a sense that having OCD made participants ‘abnormal’. Fennell and Liberato (2007) commented on ‘passing’ as the process by which an individual attempts to conceal their difficulties in order to ‘pass as normal’. This concealment is not only of a diagnosis, but of the symptoms themselves before they are even identified as being part of OCD. Reasons cited for this behaviour include protecting the individual against their own negative beliefs about OCD (self-stigma), as well as fear of stigma from others. One participant in the study attempted to convince not only others but herself that she was ‘normal’ by deliberately avoiding any information about OCD and significantly delaying to avoid diagnosis. Similarly, Murphy and Perera-Delcourt (2014) discuss participants’ desires to ‘be normal and fit in’, by concealing symptoms from peers and separating friendships groups into ‘us-them’ categories, where people without OCD are in the out-group. Stengler-Wenzke et al (2004) describe relatives who encourage the OCD patient to conceal symptoms, which is perceived as stigmatizing by the patient. However, they also describe occasions of the patient themselves forcing the relative to conceal the disorder, with the underlying reason for both being to ‘appear normal’.
Table 1: Summary of all included papers Reference Methodology and analysis Location Design Sample size Participants Belloch et al (2009) Quantitative t-test and chi squared Valencia, Spain. Survey (self report and clinical administered) N=26 Individuals with a diagnosis of OCD with no other comorbid conditions. Cathey & Wetterneck (2013) Quantitative ANOVA with bonfferoni correction USA Experimental N=157 Psychology undergraduate students Coles et al (2013) Quantitative No analysis; descriptive report USA – countrywide. Telephone survey N=577 General population Corcoran & Woody (2008) Quantitative ANOVA British Columbia, Canada Experimental vignette study Part A: N=122 Part B: N=281 Undergraduate psychology students Fennell & Boyd (2014) Qualitative Content Analysis Mississippi, USA Interviews N=54 Individuals with a current or historical diagnosis of OCD or Hoarding. Fennell & Liberato (2007) Qualitative Grounded Theory Mississippi, USA Interviews N=27 Individuals with a diagnosis of OCD.
Reference Methodology and analysis Location Design Sample size Participants Hoffner & Cohen (2012) Quantitative Hierarchical regression Wisconsin, USA Online survey N=142 Fans of television programme ‘Monk’ which portrays a character with a diagnosis of OCD. Kusalaruk et al (2015) Quantitative No analysis, descriptive report Thailand Survey N=103 Psychiatrists who have experience working with OCD. Marques et al (2010) Quantitative No analysis, descriptive report Massachusetts, USA. Online Survey N=175 Individuals with a diagnosis of OCD Murphy & (2014) Qualitative Interpretative Phenomenological Analysis United Kingdom Interviews N=9 Individuals with a diagnosis of OCD (8) and who as having OCD (1) Pavelko and Myrick (2015) Quantitative ANCOVA’s Indiana, USA 3 x 2 x 2 experimental design. N=559 Mechanical Turk Workers* (General population sample). 163 participants had a diagnosis of a mental health problem, 22 of were diagnosed with OCD, 52 additional participants had a family member with OCD. Pirutinsky et al (2009) Quantitative Mann Whitney U Ohio, USA Online experimental vignette study N=169 Orthodox Jews – general population Poyraz et al (2015) Quantitative No analysis, descriptive report Istanbul, Turkey Surveys N=96 Individuals with a diagnosis of OCD.
Table 2: Summary of qualitative papers Reference Study Aims 1 Theme 2 Theme 3 Theme 4 5 Theme 6 Theme 7 Fennel & Boyd (2007) To ascertain if and how OCD is represented in distinguishable ways in the media and to find out how viewers with OCD perceive this. Stigma Hierarchy Common Media stereotypes Viewer response and stigma Fennel & Liberato (2007) To understand the lived experience of OCD and to analyse the impacts of stigma on those with OCD. Self Stigma Experiencing stigma in interaction Anticipated Stigma Continuum of Strategies Attempting to pass as ‘normal’ Seeking to identify with others who have OCD. Re-label and reattribute Murphy & Perera- Delcourt (2014) To understand how individuals with OCD conceptualise its origin and how they experience OCD in their life course. Wanting to be normal and fit in Failing at life Loving and Hating OCD (2004) To describe how relatives of people with OCD experience stigmatization and discrimination. Onset of symptoms Concealment of the disorder Stigmatization in the medical care system Retrospective stigmatization
Table 3: Summary of quantitative papers Reference Study Aims Finding 1 Finding 2 Finding 3 Finding 4 Finding 5 Belloch et al (2009) To explore some of the variables hypothetically involved in the help seeking process OCD patients. Average delay in seeking professional help was 39.38 months. Long delay group reported feeling significantly more ashamed of their symptoms x2=2.04, p=0.04 and fearing the stigma associated with having the disorder x2=2.05, p=0.04 34.6% reported feeling ashamed of the the content of their thoughts. 30.4% reported that they feared being a mentally ill person Cathey & Wetterneck (2013) To examine how stigma related to sexual intrusive thoughts differ from other concerns. Sexually intrusive thoughts are less likely to be disclosed than contamination related thoughts f(1, 147)=17.357, p=.000. Sexual intrusive thoughts led to higher levels of social rejection than contamination related thoughts f(1,147)=16.602, p=.000. Disclosure by a friend is more socially acceptable than disclosure by a significant other f(4,144)=0.061, p=.000. Coles et al (2013) Aims to assess public knowledge and beliefs about OCD. 33% of respondants correctly labelled the vignette as OCD 14.7% respondents reported that the character in the OCD vignette should not seek help due to stigma. Corcoran & Woody (2013a) To explore appraisals of obsession-like thoughts in a non-clinical sample. To ascertain whether appraisals differed by thought content of by the identify of the person with the thought. Aggressive thoughts were stigmatized more than sexual thoughts, followed by blasphemous thoughts F(1.73,208.28)=46.98, p<.0001. Significant identity x content interaction effect with aggressive thoughts in the condition more stigmatized than in the ‘self’ condition, followed by sexual thoughts followed by blasphemous thoughts. F(2,208.28)=31.94, p<.05.
Reference Aims Finding 1 Finding 2 Finding 3 Finding 4 Finding 5 Corcoran & Woody (2013b) To explore whether appraisals differed by thought content of by frequency of the thoughts. Greater stigmatization for sexually intrusive thoughts, followed up aggressive followed by blasphemous thoughts F(1.82,510.67)=289.90, p<.0001 High frequency thoughts were stigmatized more than low frequency thoughts F(1,280)=759.64,p<.0001 Significant content x frequency interaction effect with high frequency sexually intrusive thoughts were the most stigmatized. F(1.94, 542.96)=46.59, p<.0001 Hoffner & Cohen (2012) To examine the influence of a particular television programme on attitudes towards OCD among fans of the show. Parasocial relationship with main character was associated with lower sterotypes of OCD and more willingness to interact with people who have OCD. Kusalaruk et al (2015) To study psychiatrists attitudes towards patients with OCD. 14.3% respondents reported that OCD patients were annoying. 30% respondents stated that OCD patients talk too much, ask too much and need more patients 14% reported that they do not really want to work with OCD patients 80% believed that OCD patients were difficult to treat. Marques et al (2010) To explore service barriers for individuals with OCD. 58.2% stated they delayed help seeking due to feeling ashamed of needing help. 39.3% were worried about what people would think if they knew they were in treatment 38.6% were worried about being criticized by their family if they sought psychiatric help 29.2% were not comfortable discussing problem with a health professional 26.1% were worried about being put in hospital against their will.
Reference Study Aims Finding 1 Finding 2 Finding 3 Finding 4 Finding 5 Pirutinsky et al (2009) To explore orthodox jewish attitudes towards scrupulosity versus nonreligious OCD through experimental manipulation Participants shown the vignette with religious intrusive thoughts displayed higher stigmatizing attitudes in the form of social distance. T=2.02, p<.05. Poyraz et al (2015) To identify potential variables associated with treatment seeking delay among patients with OCD. 21.9% participants reported feeling ashamed of their symptoms as a barrier to help seeking. 12.5% reported feeling afraid to have a diagnosis of mental illness Simonds & Thorpe (2003) To assess attitudes towards different types of obsessive compulsive symptoms. Fear and ratings were greatest in the harming condition compared to washing and checking vignettes X2(2)=37.56, p<001 Social evaluation ratings were least positive for the harming condition, followed by washing and then checking. Steinberg & Wetterneck (2016) To explore clinician attitudes and stigma towards various symptom presentations of OCD. Greater social rejection in the sexual harming and contamination vignettes (in than religious vignette F(3,106)=3.82),p=.02 Greater concern the ‘possible actions that could be taken by the subject’ in all vignettes compared to religious vignette F(3,106)=3.78,p=.03. Participants were less likely to disclose sexual intrusive thoughts F(3,106)=2.64,p=.05 (approached significance) Stigmatizing attitudes decreased as education increased F(3,106)=6.31, p<.01
Reference Study Aims Finding 1 Finding 2 Finding 3 Finding 4 Finding 5 Suguira et al (2000) To explore how Japanese university students perceive nine psychiatric disorders. 40% believed the family of the subject with OCD should not disclose this information even to a health professional (third lowest out of 9 disorders) 19% believed the subject with OCD would be unable to make social readjustments (second lowest of 9 disorders) 8.9% believed OCD subject would be incapable of making moral judgements (lowest of 9 disorders) 5% believed the subject with OCD would behave unpredictably (lowest of 9 disorders) Schizophrenia was most stigmatized disorder. Warman et al (2015) To determine the impact of label assigned to the target in terms of attitudes towards the target. Secondly to determine the potential value of an education intervention on attitudes. Social distance decreased following the intervention for both OCD and Schizophrenia vignettes F(1, 87)=27.146, p<.001 Perceived dangerousness for both OCD and Schizophrenia conditions decreased post intervention F(1,87)=18.76), p<.001 Perceived unpredictability decreased following the intervention for both OCD and Schizophrenia conditions F(1,87)=7.85, p<.01 Participants desired less social distance for the OCD vignette than the schizophrenia vignette F(4,85)=8.13, p<.001 Williams et al (2012) To understand the barriers to OCD treatment for African Americans Stigma was the second more commonly endorsed reason for delaying help seeking, most common was financial barriers. Worries about other people finding out, worries about people judging him/her and having negative feelings about those who obtain mental health care were the stigma items.
What informed participants’ initial diagnosis? Table 4: Influences on initial diagnosis Pedophile N OCD N N N 1. Prior knowledge and understanding of disorders “Information gained from educational magazines etc” – Participant who assigned an initial diagnosis of Pedophile “I had heard about OCD with these thoughts” – Participant who assigned an initial diagnosis of OCD. 6 8 1 15 2. Content of vignette 40 3 6 49 2.1 Nature of thoughts “I just thought if you had those thoughts it meant you were a pedophile” 31 0 0 31 2.2 Length of time that the thoughts had occurred “The words for some time and often” 8 0 0 8 2.3 Just thoughts, no mention of action. “He just had thoughts do I didn’t think he was a pedophile” – Participant who assigned an initial diagnosis of OCD. “The statement didn’t say he had acted on his thoughts”- Participant who responded ‘other’ at initial diagnosis. 0 3 4 7 2.4 The age difference between target and his niece “Their ages” 1 0 0 1 2.5 Thoughts about a family member “It was a family member whom he thought” 0 0 2 2
behavior therapy. Behavior Therapy, 36(4), 393-400. Warman, D,. Phalen, P., & Martin, J. (2015). Impact of a brief education about mental illness on stigma of OCD and violent thoughts. Journal of and Related Disorders. 5. 16-23. Westbrook, D., Kennerley, H., & Kirk, J. (2011). An introduction to Cognitive Behaviour Therapy: Skills and Applications. England, UK; Sage Publications LTD. D., & Roberts, A. (2014). Obsessive-compulsive disorder. British Medical Journal. 348, [g2183].