Impact of a brief education on stigma related to sexual intrusive thoughts about children

Terri Porter

Submitted for the Degree of

Doctor of Psychology(Clinical Psychology)

School of Psychology

Faculty of Health and Medical Sciences

University of Surrey

Guildford, Surrey

United Kingdom

September 2017

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Statement of Originality

This thesis and the work to which it refers are the results of my own efforts. Any

ideas, data, images, or text resulting from the work of others (whether published or

unpublished) are fully identified as such within the work and attributed to their

originator in the text. This thesis has not been submitted in whole or in part for any

other academic degree or professional qualification.

Name: Terri Porter.

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Overview of Portfolio

Treatment-seeking delay is a substantial problem in obsessive-compulsive disorder

(OCD). There is evidence to suggest that stigma is an important factor in delaying

help-seeking.

Part one of this portfolio presents a review of the evidence for self-stigma and

anticipated stigma in obsessive compulsive disorder. The findings suggest that there

is evidence that individuals with OCD experience self-stigma and stigmatisation

from others, and that stigma is an important factor in delaying treatment-seeking.

Part two presents an empirical paper that aimed to assess the impact of an education

intervention on attitudes towards individuals who experience sexual intrusive

thoughts involving children. The findings suggested that a brief education

intervention is an effective way of reducing stigmatising attitudes and potential

misdiagnosis of sexual intrusive thoughts about children.

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Table of Contents

Acknowledgements ………………………………………………………… 6

Part One: Literature Review ………………………………………………… 7 Abstract ……………………………………………………… 8Introduction ……………………………………………………… 9Method ………………………………………………………. 15Search Methodology ……………………………………………………… 15

Database Search Strategy …………………………………………………… 15Other Searches ………………………………………………………………. 16

Study Selection ………………………………………………………………. 16 Data Extraction, evaluation and synthesis ………………………………………… 18Results ……………………………………………………………… 18

Overview of Studies …...……………………………………… 18Synthesis of Main Findings …………………………………………… 19

Quality Appraisal …………………………………………………………….… 36 Discussion ………………………………………………………………. 40

Conclusion ………………………………………………………………. 46 References ………………………………………………………………. 48

Appendix A: Appraisal tools ...…………………………………………………… 53

Part Two: MRP Empirical Paper ……………………………………………….. 64Abstract ………………………………………………………………. 65Introduction ………………………………………………………………. 67Research Hypotheses ………………………………………………………………. 74Method ………………………………………………………………. 75

Design ...……………………………………………………………. 75Participants ……………………………………………………………... 75Materials and Measures ………………………………………………… 76Procedure ………………………………………………………………. 80Ethical Considerations ……………………………………………………… 81

Data Analysis .………………………………………………………………. 82Quantitative Analysis ……………………………………………………… 82Qualitative Analysis …………………………………………………………. 82

Results ..………………………………………………………………. 83Hypothesis 1 …………………………………………………………………. 85

Cognitive Responses ………………………………………………………. 87Hypothesis 2 …………………………………………………………………. 97

Hypothesis 3 ………………………………………………………………. 98Discussion …………………………………………………………………101

Practical Implications …………………………………………………… 104Methodological Limitations …………………………………………. 108Implications for Future Research ………………………………………… 110

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Conclusion ………………………………………………………………. 111

References …….………………………………………………………. 113

List of Appendices …………………………………………………………….. 117Appendix A …………………………………………………………… 118Appendix B …………………………………………………………… 119Appendix C …………………………………………………………… 120Appendix D …………………………………………………………… 122Appendix E …………………………………………………………… 123Appendix F .………………………………………………………..… 124Appendix G .………………………………………………………….. 126Appendix H …………………………………………………………… 128Appendix I …………………………………………………………… 130Appendix J …………………………………………………………… 131Appendix K …………………………………………………………… 133

Part 3: Summary of Clinical Experience ………………………… 135

Part 4: Table of Assessments Completed During Training ……….. 137

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Acknowledgements

I firstly wish to thank the participants who kindly gave their time to complete this research project. Secondly, to my supervisor Laura Simonds for her expertise, support and guidance over the last 3 years. I also wish to thank my second supervisor, Linda Morison, for sharing her wealth of statistics wisdom with me.

I would like to thank my family and friends, particularly my parents, brother and my partner Dave, for their unwavering support, patience and encouragement over the last 3 years.

Lastly, I would like to thank my colleagues in Cohort 43, and particularly my PPD group. I have valued your reassurance and support more than I can say. This course would have been so much harder without you all.

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Part One: Literature Review

What is the evidence for self-stigma and stigmatisation by others in Obsessive-Compulsive Disorder?

Word Count: 7967

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Abstract

Introduction: Stigma is defined as an attribute that is deeply discrediting and reduces

a whole person to a tainted, discounted one. Mental illness is known to be such an

attribute; there is a wealth of research evidencing the experiences of stigmatisation in

people with mental health problems. Experiences of stigma in obsessive compulsive

disorder (OCD) are less researched. The current review aimed to ascertain the

evidence for self-stigma and stigmatisation by others in OCD.

Method: The ‘Psychology Cross Search’ function was used to search five databases

for relevant research using the keywords: obsess* OR compuls* OR OCD and

stigma*. A further hand search of papers for key references was conducted. A total

of nineteen relevant papers met the inclusion criteria and were critically appraised.

Results: Eight themes were identified from both qualitative and quantitative research

papers. These themes were i) wanting to be normal, ii) redefining OCD, iii)

challenging stigma, iv) stigmatisation from others, v) stigmatisation from

professionals, vi) stigma as a barrier to help-seeking, vii) stigma hierarchy and viii)

media portrayals of OCD.

Discussion: It is evident that stigma affects people with a diagnosis of OCD. This is

primarily in the substantial length of treatment delay, with stigma cited as one of the

predominant reasons for this. Individuals with OCD experienced stigmatisation from

others, including their own relatives and professionals, and make efforts to adapt

their behaviour in order to avoid stigmatisation from wider society. Future research

would benefit from developing and testing the effectiveness of anti-stigma

interventions for OCD – ensuring that this encapsulates the range of presentations of

OCD and not just stereotypical ones.

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1.0 Introduction

1.1 Mental Health Stigma – Theory and Research Evidence

There is a lack of consensus in the literature as to the definition of ‘stigma’, most

likely due to the term being used in multiple disciplines such as psychology,

sociology, political science and anthropology, with each having a slightly different

focus (Link and Phelan, 2001). One of the most widely used definitions of stigma

comes from Goffman (1963), who states that stigma is “an attribute that is deeply

discrediting” and that reduces the person “from a whole and usual person to a tainted,

discounted one” (p3).

Self-stigma is used to describe the process of an individual internalising

negative public attitudes and believing them to be true about themselves (Corrigan &

Rao, 2012). It has been noted that there are three ways an individual can experience

self-stigma; firstly, with ‘self-prejudice’ whereby individuals agree with society’s

stereotypes and have decreased self-esteem and self-efficacy as a result. Secondly,

with ‘indifference’, where an individual remains unaffected by negative encounters

with the public, and lastly by actively challenging society’s negative attitudes

(Corrigan & Watson, 2002). However, in the latter there is still an assumption made

by the individual that others will treat them negatively and, as such, there remains

internalised stigma on some level.

Stigma associated with mental health difficulties has been documented

widely within the literature. It has been found that stigma is associated with less

treatment seeking (Corrigan, 2004), discrimination in housing and education (Link,

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Struening, Rahav & Nuttbrock, 1997) and poorer outcomes of treatment (Corrigan &

Rao, 2012). In regards to employment, many people with mental health problems

reported that they lost out on jobs once their potential employer found out about their

difficulties and found that co-workers avoided them or treated them differently

(Sharac, McCrone, Clement & Thornicroft, 2009). Further to this, people with

mental health difficulties experience diagnostic overshadowing, a form of stigma

from professionals within healthcare systems, whereby their physical ailments are

not taken seriously due to comorbid mental health concerns (Jones, Howard &

Thornicroft, 2008). The impact of stigma around mental health difficulties becomes

even more complex when an individual has additional stigmatised labels such as

being from an ethnic minority background (Gary, 2005), or part of the LGBT

community (Mizock & Mueser, 2014), often referred to as ‘double stigma’.

There is evidence to suggest that stigma surrounds individuals with a range of

mental health problems. This includes depression (Pyne et al, 2004; Barney,

Griffiths, Jorm & Cristensen, 2009), anxiety disorders (Davies, 2000), eating

disorders (Crisp, 2005; Mond, Robertson-Smith & Vetere, 2009), personality

disorders (Aviram, Brodsky & Stanley, 2005) and in substance misuse disorders

(Link et al, 1997) with many patients reporting that their symptoms were not taken

seriously, and that occasionally people were misdiagnosed or mismanaged. One

study in particular found that having co-morbid diagnoses of depression and anxiety

led to an even higher likelihood of perceived stigma (Alonso et al, 2008). One large

scale study looked at the experiences of stigmatisation and discrimination of people

with a diagnosis of psychosis in 14 European countries. In this study, almost 70% of

respondents had moderate to high levels of discrimination. The authors concluded

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that self-stigma is common and sometimes severe in people with psychosis, and that

this can be a barrier to recovery (Brohan, Elgie, Sartorious, Thornicroft, 2010).

Modified Labelling Theory (Link, Cullen, Struening, Shrout & Dohrenwend,

1989) attempts to explain the influence that labelling can have on people with mental

health difficulties. The theory posits that, through early socialisation individuals

develop beliefs about devaluation and discrimination of those who differ from the

social norm in terms of their mental health. Before an individual has developed any

symptoms of mental illness, they will already possess preconceptions around the

extent to which people with mental health problems will be devalued and

discriminated against by ‘most people’ in society. Next, once an individual obtains

an official diagnosis, these preconceptions about devaluation and discrimination

suddenly become personally relevant to the self. Following this, Link and colleagues

(1989) suggest that an individual will respond to labelling in one of three ways.

Firstly, by attempting to conceal their diagnosis and treatment history in order to

avoid rejection from others. Secondly, by withdrawing from social interaction

altogether or by limiting interactions only to individuals who already acknowledge

and accept the diagnosis and who, therefore, will not reject the individual. Thirdly,

an individual may seek to educate others in order to reduce negative attitudes based

on the understanding that they feel that stigmatisation is likely. Negative

consequences may follow directly as a result of one’s beliefs about how others

perceive mental illness as this could result in strong feelings of shame. Negative

consequences may also follow as a result of attempts to protect the self by

withdrawing as this can lead to the individual developing low self-esteem through

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feeling ostracised and different to others. Attempts to protect the self from rejection

may have negative consequences as such attempts include limiting opportunities for

developing social networks or seeking satisfying employment. Due to reduced self-

esteem, strong feelings of shame and potentially poor social networks and

employment opportunities, the individual may actually be more likely to experience

an exacerbation of mental health difficulties as these are all well documented risk

factors for psychological difficulties (Dalgard & Tambs, 1995; Orth, Robins,

Trzesniewski, Maes & Schmitt, 2009; Paul & Moser, 2009).

1.2 Obsessive Compulsive Disorder- Overview of Phenomenology

Little is known about how stigma affects individuals with a diagnosis of Obsessive-

Compulsive Disorder (OCD). OCD is characterised by the presence of obsessions,

compulsions or both. Obsessions are defined as recurrent and persistent thoughts,

images or urges which cause distress to the individual. Compulsions are defined as

repetitive behaviours or mental acts that an individual feels compelled to perform in

response to an obsession (Diagnostic and Statistical Manual (DSM) 5th Edition;

American Psychiatric Association, 2013). OCD has a lifetime prevalence rate of

2.3% (Kessler, Petu-Khova, Sampson, Zaslavsky & Wittchen, 2012), with studies in

the UK demonstrating prevalence rates of 1.1% (Torres et al, 2006). The World

Health Organisation has ranked OCD in the 10 most debilitating conditions by lost

income and poorer quality of life (Veale & Roberts, 2014).

There is some consensus in the literature that OCD is a heterogeneous

condition. As a result, efforts have been made to classify the disorder into subtypes.

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Initially three subtypes were proposed: i) symmetry/hoarding, ii) contamination/

cleaning and iii) pure obsessions (Baer, 1994). However, in the largest study to date,

involving a meta-analysis of 21 studies totalling over 5000 participants using the

Yale-Brown Obsessive Compulsive Checklist, four subtypes were proposed: i)

Forbidden thoughts such as aggression, sexual, religious and somatic obsessions

alongside checking compulsions, ii) Symmetry obsessions and repeating, ordering or

counting compulsions, iii) Cleaning and contamination, and iv) hoarding obsessions

and compulsions (Bloch, Landeros-Weisenberger, Rosairo-Campos, Pittenger &

Leckman, 2008). In the latest DSM (DSM-V; APA, 2013), hoarding has been

classified separately from OCD in recognition that its phenomenology is different in

important ways from OCD.

1.3 Disclosure and Stigma Issues in OCD

One fifth of individuals with a diagnosis of OCD delay or avoid seeking help due to

fears about what others may think (Goodwin, Koenen, Hellman, Guardino &

Struening, 2002). A study looking at reasons for treatment seeking delay found that

35% of individuals delayed seeking help because they felt ashamed of the content of

their thoughts and the average delay in treatment-seeking was over three years

(Belloch, del Valle, Morillo, Carrio, & Cabedo, 2009).

Studies of anticipated stigma in OCD have reported differences by OCD

subtype with studies focusing on forbidden thoughts such as sexual intrusive

thoughts. There is evidence to suggest that obsessions around themes that are morally

reprehensible are less likely to be reported (Simonds & Thorpe, 2003; Cathey &

Wetterneck, 2013). Cathey and Wetterneck (2013) argued that sexual obsessions are

likely to be underreported, under-recognised and under-treated than other types of

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obsessions, finding that individuals were less likely to disclose sexual obsessions due

to concerns about social rejection in particular. They suggest also, that even in

individuals with a recognised history of OCD, obsessions of a sexual nature may not

be reported. Individuals may also be concerned about the reaction of the clinician.

Mental health professionals sometimes lack understanding of unacceptable/taboo

obsessions and can misdiagnose/misclassify them. Glazier and colleagues (2013)

found that sexual obsessions about children in particular were commonly

misidentified by clinicians, with 39% of participants attributing these intrusive

thoughts to pedophilia.

The foregoing literature indicates that individuals with unacceptable intrusive

thoughts, and particularly those with sexual themes, are likely to anticipate social

rejection and perhaps face misdiagnosis and possible legal sanctions should they

disclose the content of their thoughts. It is also evident that clinicians might fail to

delineate thoughts associated with OCD from other conditions. Therefore,

unacceptable thoughts are likely to be under-reported or not reported at all leaving

the individual to manage significant distress. How the public perceives symptoms of

mental health problems is a critical aspect of facilitating treatment access if fear of

negative evaluation is one barrier to help-seeking (Simonds and Thorpe, 2003).

Assessing public attitudes to OCD symptoms is important so that any misperceptions

can be targeted in public education campaigns. Recommended treatment for OCD

relies on testing a person’s beliefs in reality. This is unlikely to happen unless a

person is able to disclose their thoughts and associated beliefs. Stigma is evidently a

barrier to disclosure. It is therefore important to attain a greater understanding of

stigma in order to develop anti-stigma strategies which would allow more prompt

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support and intervention. Given that individuals with OCD delay help seeking for

significant periods of time, and that stigma has been cited as one of the reasons for

this delay, the current review seeks to ascertain the evidence for self-stigma as well

as stigmatization by others in OCD. There is currently one existing review in this

area (Ociskova et al, 2013). However, due to issues around quality, it has not been

included in the current review. Firstly, it was not systematic and there was no clear

focus for the review. There was an absence of inclusion or exclusion criteria for the

sample of papers, and no description or appraisal of their quality. Alongside this,

many of the papers cited in this review were not about OCD, and therefore it is

difficult to draw valid conclusions from it. The findings of the current review might

therefore contribute to further research and theorizing on the role of stigma in OCD.

2.0 Method

2.1 Search Methodology

2.1.1. Database search strategy. The ‘Psychology Cross Search’ function

was used to search for relevant literature. This function searches across several

databases simultaneously: PsycARTICLES, PsycINFO, Medline, Psychology and

Behavioural Sciences Collection and Scopus. The databases PubMed and Web of

Science were also searched. The search terms used were: stigma* AND Obsess* OR

“Compuls*” OR “OCD”. Searches were conducted on 17th November 2016.

2.1.2. Other searches. A hand search of references in key papers was also

conducted to identify further relevant literature.

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2.2 Study selection

The initial search yielded a total of 398 records. Papers were excluded at this point if

they were not a peer-reviewed journal article (n=45), and if they were not available

in the English language (n=32). This left 321 results. Duplicates were removed

(n=109) which left 212 papers. A further three potentially relevant articles were

identified from hand searches of the reference lists of key papers. The remaining 215

papers were then screened by title and abstract for relevance to the inclusion criteria.

Inclusion criteria were: i) presents primary data on perceived stigma from individuals

with OCD; ii) presents primary data about attitudes of the general public towards

OCD; or, iii) presents primary data about attitudes of professionals towards OCD.

There were a number of reasons why papers were not included in the review. The

most common reasons for exclusion were: the article was about a specific mental

health problem other than OCD (n=71); the article was about mental health disorders

generally (n=28); the article was about the efficacy of treatment for OCD (n=28); or,

the article was about stigma more generally (n=21). 24 papers met the inclusion

criteria based on title and abstract screening. The full text was obtained for each.

Whilst for one paper the abstract was in English, further work to locate the article

indicated the full text was unavailable in the English language and could not,

therefore, be included. Following full text screening, four further papers did not meet

inclusion criteria. Nineteen papers met the inclusion criteria and full text articles

were then critically appraised and included in the review. The full search

methodology is represented in Figure 1 below.

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Potentially eligible papers n=398

Exclusion of any duplicate records

(n=109)

Exclusion of any paper unavailable in English language (n=32) or non peer-reviewed journal (n= 45)

Abstracts screened for relevance to inclusion criteria (n= 212)

Articles excluded if they did not meet the following inclusion criteria (n=191)

-primary data on perceived stigma from the person with a diagnosis/symptoms of OCD.

-primary data on attitudes of the general public towards people with OCD.

-primary data on attitudes of clinicians towards OCD.

Additional relevant articles found through hand searching n=3

Full text articles assessed for eligibility n=24

Articles included in the review n=19

Figure 1: Flow chart describing search process.

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2.3 Data Extraction, Evaluation and Synthesis

Data from all nineteen papers in the final sample were extracted and a database of

relevant information was compiled. All papers were critically appraised using

relevant study evaluation dimensions from the National Institute for Health and Care

Excellence (NICE) Quality Appraisal Checklists (2012) for qualitative research and

quantitative research, as appropriate to each study. Due to the inclusion of both

quantitative and qualitative studies, a narrative data synthesis approach was used.

Each paper was read in full and the main findings were extracted into a database.

Findings from each paper were then categorised into themes based on similarity of

content.

3.0 Results

3.1 Overview of studies included in the review

Table 1 summarises the nineteen studies included in this review. Four of the final

sample of studies were qualitative and the remaining fifteen were quantitative. Most

studies were conducted in western societies, with the majority being conducted in the

United States (n=11). Only three were conducted in non-western societies (Japan,

Thailand and Turkey). The studies employed a range of study populations, including

patients with a diagnosis of OCD, relatives of individuals with OCD, general

population samples, and mental health clinicians.

3.2 Synthesis of Main Findings

The initial process of synthesis involved extracting the main findings from each

study separately. Following this, findings across studies were organised into themes

based on content similarity. This yielded eight main themes, each of which is

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described below. Some themes were derived from synthesising findings from

qualitative studies, whilst others are comprised of findings from both qualitative and

quantitative studies. Table 2 summarises the main findings identified in qualitative

papers included in this review. Table 3 summarises the main findings from the

quantitative papers.

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 help-

seeking 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 their 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’.

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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

Texas, 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.

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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 & Perera-Delcourt (2014)

Qualitative

Interpretative Phenomenological Analysis

United Kingdom Interviews N=9 Individuals with a diagnosis of OCD (8) and who self-identified 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 which 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.

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Reference Methodology and analysis Location Design Sample size

Participants

Simonds & Thorpe (2003)

Quantitative

Friedman test and paired comparison using Wilcoxons with bonferroni correction

United Kingdom Experimental vignette study N=113 Undergraduate psychology students

Stengler-Wenzke et al (2004)

Qualitative

Thematic field analysis and grounded theory

Germany Interviews N=22 Relatives of people with a diagnosis of OCD

Steinberg & Wetterneck (2016)

Quantitative

ANOVA’s

Texas, USA Online experimental vignette study

N=110 Mental Health professionals (66) and graduate students (44) working with patients who have OCD.

Suguira et al (2000) Quantitative

No analysis, descriptive report

Tokyo, Japan Survey N=79 Undergraduate psychology students

Warman et al (2015) Quantitative

ANOVAs

Indianapolis, USA Experimental vignette study N=90 Undergraduate students taking a psychology course

Williams et al (2012) Quantitative

Mokken Scale Analysis

Philadelphia, USA Questionnaire and Interview N=83 Individuals with current OCD diagnosis (71), historical diagnosis (4) or no history of OCD (8).

*Mechanical Turk is a workplace system run by Amazon which enables individuals to source a workforce online. This study was advertised on the Mechanical Turk Platform and all participants were paid $0.51 for participating.

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Table 2: Summary of qualitative papers

Reference Study Aims Theme 1 Theme 2 Theme 3 Theme 4 Theme 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

Stengler-Wenzke (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

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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 among 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 might differ from other obsessive-compulsive 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 ‘other’ condition more stigmatized than in the ‘self’ condition, followed by sexual thoughts followed by blasphemous thoughts. F(2,208.28)=31.94, p<.05.

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Reference Study 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 their problem with a health professional

26.1% were worried about being put in hospital against their will.

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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 shame 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 order), than religious vignette F(3,106)=3.82),p=.02

Greater concern about 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

26

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.

27

28

Some relatives avoided being out in public with the individual who has OCD in

order to save themselves from embarrassment. Similarly to Fennell and Liberato

(2007), Stengler-Wenzke et al (2004) discuss attempts to conceal both symptoms

themselves and also the “discrediting” label of OCD. These studies provide evidence

for self-stigma in OCD, whereby the individual with OCD believes they do not meet

social norms and, therefore, attempts to conceal these aspects of themselves.

3.2.2 Redefining OCD. Murphy and Perera-Delcourt (2014) report one

participant who redefined his difficulties as something less stigmatizing by

trivialising his distress so that others would find him more socially acceptable. In

contrast, participants in Fennell and Liberato’s study (2007) used medicalised

language, for example conceptualising OCD as a neurological disorder in order to

move away from the stigma of mental ill health. Interestingly, Pavelko and Myrick

(2015) found that participants responded less favourably (i.e. with increased desire

for social distance and decreased ratings of how much they ‘liked’ individuals with

OCD) to people who used trivialised language to talk about OCD on social media.

This raises the possibility that some efforts made by individuals with OCD to

minimise or transform their OCD symptoms into something more socially acceptable

may actually have negative effects. Interestingly, the same study also found that

participants responded more positively towards a subject with OCD if they used

more clinical, medicalised language, which would support the attempts made by

participants in the Fennel and Liberato (2007) study. Murphy and Perera-Delcourt

(2014) discuss this behaviour as ‘challenging stigma’. However, Fennell and

Liberato (2007) query whether trivialising or medicalising distress is an attempt to

29

challenge stigma. In their view, the act of redefining difficulties in this way actually

implies acceptance of the social norms that construct stigma and, therefore, does not

challenge it.

Fennell and Liberato (2007) also talk about reduction of self-stigma through

personification and externalisation of OCD. This allows the person to construct an

identity whereby they can keep a ‘healthy self’ whilst OCD is an outside influence

that is attacking them. This redefinition implies that the person feels deserving of

respect and undeserving of stigma.

3.2.3 Challenging Stigma. Fennell and Liberato (2007) were the only

authors to consider more explicitly the idea that individuals might challenge stigma

from others, for example, in the form of participating in research. This process

allows the individual to ‘pass as normal’ publicly, but privately the individual can

contribute towards public understanding of the disorder and, in so doing, challenge

stigma and negative attitudes. Fennell and Liberato also described individuals who

engage in social activism, by writing pieces for mass media or actively fighting

stigma in the workplace.

3.2.4 Experiences of stigma from others. A number of papers described

participants’ experiences of being stigmatised by others. Fennell and Liberato (2007)

discussed one participant from India who had been physically attacked by her parents

due to believing that she brought shame to the family. Similarly, Stengler-Wenzke et

al. (2004) describe stigma from the relatives’ perspective, and document a number of

30

family members who had shown stigmatizing reactions to their loved ones with

OCD. They report that this was underpinned by a lack of knowledge about OCD,

helplessness and insecurity when dealing with changes in their loved ones.

Whilst not a consideration of direct experiences of stigma, evidence from

Coles et al. (2013) adds to the findings of Stengler-Wenzke et al (2004) in that lack

of knowledge about OCD might underpin stigma. Coles et al. (2013) found that only

33% of general population respondents were able to correctly identify OCD from a

vignette describing its symptoms. These authors also found that around 15% of

respondents stated the individual in the vignette should avoid seeking help due the

stigma they will experience as a result. Further to this, Suguira et al. (2000) found

that only 40% of an undergraduate sample had heard about OCD as a diagnosis

compared to over 90% who had heard of schizophrenia.

3.2.5 Stigmatisation from healthcare professionals. Stengler-Wenzke et al

(2004) discuss a lack of understanding in professional services, the length of time

taken to recognise the disorder, and a ‘sticking plaster’ approach to treatment. One

interviewee discussed an example of a person with OCD being unwell and his doctor

continually writing sick notes for him to be away from work, with no attempt to

deliver treatment. More explicitly, some studies have discussed stigmatising attitudes

of clinicians towards OCD. Kusularuk et al. (2015) surveyed a sample of

psychiatrists in Thailand about their attitudes towards working with OCD. Thirty

percent of the sample stated that OCD patients ‘talk too much, ask too much and

require more time and patience’ (p1705) and 14.3% found patients with OCD to be

annoying. Although the majority of the sample reported positive attitudes, the

31

number of negative attitudes towards OCD and people who experienced symptoms

of this disorder by trained professionals is striking. A more recent study by Steinberg

and Wetterneck (2016) also explored clinicians’ attitudes towards patients with

OCD. The study found greater levels of social rejection among mental health

professionals towards sexual intrusive thoughts, followed by harming and

contamination thoughts and then blasphemous thoughts. Clinicians were also

concerned about potential risk to others, particularly from individuals who

experienced sexual intrusive thoughts. Although clinicians may have varying

attitudes towards different manifestations of OCD, this reveals a potential lack of

understanding about the disorder.

3.2.6 Stigma as a barrier to help-seeking. Several quantitative papers

employed the use of surveys to gather information about help-seeking from samples

of individuals with OCD. Among these papers, stigma was cited as a common reason

for delaying help seeking. Belloch et al (2009) found that the average delay in help-

seeking for OCD was almost 40 months. Many respondents felt ashamed of their

symptoms (35%) and feared being a mentally ill person (30%). Respondents who

delayed help-seeking for the longest duration were significantly more ashamed of

their symptoms. A study by Marques and colleagues (2010) found higher levels of

shame in their sample, with 58.2% of respondents reporting one of the primary

reasons for delaying treatment was feeling ashamed of their symptoms. Many

respondents anticipated stigma from others in the form of being worried about what

others would think if they were in treatment (39%). Importantly, 29.2% of the

sample felt uncomfortable discussing OCD with a health professional and 26.1%

were worried about being put in hospital against their will. Poyraz and colleagues

32

(2015) found slightly less shame in their sample with 21.9% reporting that they felt

ashamed of their symptoms, with this being a barrier to help seeking. The

aforementioned studies present descriptive data on reasons for delaying treatment,

but made no attempt to rank these reasons in order of significance. In a study

conducted in the USA, Williams and colleagues (2012) conducted a scale analysis to

ascertain how important each factor was for delaying treatment. Stigma was second

only to concerns about financial implications. Given that, in the USA, people have to

fund their own treatment, it is understandable that this was the primary concern.

3.2.7 Stigma Hierarchy. Evidence for a ‘stigma hierarchy’ was present in

both qualitative and quantitative studies. Sugiura and colleagues (2000) compared

participants’ attitudes towards OCD with schizophrenia, delusional disorder,

depression, social phobia, anorexia nervosa, mania and nicotine dependence. Across

all attitude/evaluation variables, schizophrenia was perceived most negatively, and

OCD was often perceived least negatively of all the disorders examined. For

example, more than 90% of participants believed that somebody with delusional

disorder would be incapable of making moral judgements, would behave

unpredictably, and that the family of someone with delusional disorder should keep

this hidden. Comparatively, only around 9% of respondents believed someone with

OCD would be incapable of making moral judgements, 5% believed that they would

be unpredictable and 40% of respondents believed that families should keep this

diagnosis hidden. This would indicate a stigma hierarchy in mental illness, with

some disorders being much more stigmatised than others. Although OCD was lower

in the hierarchy and might, therefore, be less stigmatised in comparison with other

33

mental health problems this conclusion is premature as it is based on a single study.

However, Warman et al. (2015) similarly found that participants desired less social

distance from a subject with a diagnosis of OCD than they did with a person labelled

with schizophrenia. One possible explanation for this could be the accuracy of public

understanding of OCD, which is arguably gained mostly through mass media.

In their study, Fennell and Boyd (2014) found that participants with a

diagnosis of OCD considered that the media portrays OCD to be a ‘joke’ condition.

Some participants felt it was commonly believed that OCD was a less serious mental

illness and as such was less stigmatized. It was felt that OCD was stereotyped as

checking and hoarding behaviours rather than negative unacceptable intrusive

thoughts, making it perceived publicly to not be ‘a real illness’. In support of the

argument about poor public awareness, Coles et al (2013) found that only 33% of

respondents were able to correctly label a vignette describing OCD symptoms as

OCD. Therefore, a further explanation of the differences evident in Warman et al.

(2015) and Suguira et al. (2000) could be poor mental health literacy among the

general public, in that the more stigmatising manifestations of OCD are not

represented in popular culture. The studies reviewed also suggested there might be a

stigma hierarchy within OCD. In a study of individuals who identify as being

orthodox Jewish (Pirutinsky Rosmarin & Pargament, 2009), religious intrusive

thoughts were stigmatised more highly than non-religious OCD (safety and checking

intrusions and compulsions). This might indicate that there could be cultural

differences in how stigma hierarchies are constructed.

Simonds and Thorpe (2003) found, in a sample of undergraduate students

who were asked to read OCD vignettes, that fear and shame ratings were

34

significantly higher when participants were asked think about harm-related intrusive

thoughts, compared to washing or checking intrusive thoughts. Social evaluations

were also significantly more negative in the harm-related thought condition.

Corcoran and Woody (2008) demonstrated that aggressive intrusive thoughts were

rated significantly more negatively than sexual intrusive thoughts, and these in turn

were rated more negatively than blasphemous intrusive thoughts. In a similar study

published in the same paper, Corcoran and Woody (2008) later found that when the

sexual intrusive thought involved a child, participants rated the individual with this

thought much more negatively than the person with an aggressive thought, and this

in turn more negatively than the blasphemous intrusive thought. Cathey and

Wetterneck (2013) found that participants reported that they would be less likely to

disclose a sexual intrusive thought compared to a contamination related intrusive

thought. They also found that an individual with sexual intrusive thoughts was

associated with higher levels of social rejection than a person with contamination

related thoughts. Taken together, the studies reviewed in this section so far indicate

potential differences in the level of stigmatisation between OCD and other mental

health problems. However, there is also evidence to suggest that given the

heterogenous nature of OCD, there might be differences in stigmatisation even

within this specific disorder, and that the construction of hierarchies may be

influenced by cultural factors.

3.2.8 Media portrayal of OCD. Fennell and Boyd (2007) conducted a

content analysis on various film portrayals of OCD and interviewed individuals with

a diagnosis of OCD about their thoughts on media portrayals. There is very little

research on OCD in the media. Given that this is where the general public are likely

35

to learn about the disorder, it is important to understand the potential messages that

are being conveyed about the disorder.

Fennell and Boyd (2007) found that some manifestations of OCD were

portrayed more frequently than others, such as contamination and cleaning

obsessions and compulsions. The media rarely focuses on harm-related intrusions

and as a result, respondents with OCD did not feel that they could relate to media

portrayals. Respondents felt that the media portrayed OCD as ‘akin to a personality

trait or habit that anyone might engage in from time to time’ instead of a ‘real

disorder’ which also invalidated their experiences.

Within the media content examined, people around the person with OCD

were noted to respond most commonly with frustration or confusion (97.4%), closely

followed by disparagement and ridicule (87.2%). Worryingly, 37.5% of mental

health professionals in these films were portrayed as sinister or even criminals. For

some people, the media may be a primary source of information regarding mental

health treatment. If the media are portraying professionals in this way, it would not

be surprising for people to be fearful of seeking help. Many respondents in the study

were concerned that these films did not accurately represent OCD. As a result, they

considered that viewers were likely to get an incorrect understanding of what OCD

is, which could in turn contribute towards stigma. However, respondents largely

disagreed on specifically what kinds of portrayals might contribute most towards

stigma, and which ones might reduce stigma. It is worth noting that a number of

respondents stated that media portrayals of OCD led to them realising they had

difficulties and further led to help-seeking.

36

Hoffner and Cohen (2012) reviewed one particular media programme ‘Monk’

– a detective programme where the main character has a diagnosis of OCD. This

study in particular talks about parasocial relationships – the extent to which

respondents felt they had an emotional bond with a character. The study found that

respondents with a stronger parasocial relationship with the main character had lower

stereotyped beliefs about OCD and increased willingness to interact with someone

with OCD. The study also found that respondents who had experience of OCD felt

that the programme made them feel significantly more able to disclose their

difficulties, more likely to seek help for them, and increased their self-esteem. Taken

together, the studies in this section highlight the power of the media in reinforcing

negative attitudes, presenting a misleading or incomplete picture of a disorder, but

also in challenging stigma by portraying characters with OCD in a more realistic and

perhaps more favourable way.

3.3 Quality Appraisal

All nineteen papers were assessed for quality using relevant dimensions of the NICE

quantitative and qualitative critical appraisal tools. The main limitation of the

qualitative studies (Fennell & Liberato, 2007; Fennell & Boyd, 2007; Murphy &

Perera-Delcourt, 2014) was the description of the sample. From the limited data

presented, it was difficult to understand the composition of the sample and, as a

result, who the findings were principally representative of. A strength of these papers

was that they were generally quite inclusive in terms of whether the participant met

criteria for OCD. For example, Murphy and Perera-Delcourt (2014) let the

participant decide whether or not they felt they had OCD. This meant that people

who had not sought help and did not have an ‘official’ diagnosis were able to

37

participate. However, at the same time this raises a question of whether the views are

representative of those who have sought help.

Fennell and Liberato (2007) used the internet to recruit participants to their interview

study. Further to this, they gathered feedback from their participants regarding the

interview questions in order to generate new questions and improve future

interviews. These new questions were included in follow up interviews with previous

participants to ensure some level of consistency. Similarly, Fennell and Boyd (2007)

consulted with their participants in regards to the coding framework they used to

code media content, which would be a clear strength of both pieces of research.

These studies however, did not acknowledge a number of limitations aside from

some general critique around sample size in qualitative research and their self-

selecting sampling strategy. Similarly, Stengler-Wenzke et al (2004) also do not

acknowledge limitations other than discussing sample size limitations involved in

qualitative research. This particular paper, although presenting a sound methodology

and reliable data collection, does not acknowledge that the severity of the patient’s

OCD may have affected the responses from relatives who participated in the study.

Recruitment was done through outpatient clinics, where patients had already sought

help and presumably had severe levels of symptoms in order to access treatment. The

findings from this particular paper but also from a number of others mentioned,

might be different in samples of people who do not reach treatment services or those

whose symptoms of OCD are less severe.

One of the limitations of many of the quantitative studies which aimed to

examine general attitudes towards OCD (Cathey & Wetterneck, 2013; Corcoran &

Woody, 2008; Simonds & Thorpe, 2003; Suguira et al, 2000; Warman et al, 2015) is

38

that they used samples of undergraduate psychology students. Such samples are

limited in their generalizability as they are unlikely to represent the general

population in terms of knowledge of mental health, levels of empathy, and are more

homogenous in term of demographics such as age, gender, education level and

ethnicity. However, as a strength, some studies discussed this as a limitation

transparently within the discussion (Simonds & Thorpe, 2003; Cathey & Wetterneck,

2003). Corcoran & Woody (2008), despite not acknowledging the limitations of

using a sample of undergraduate students, were otherwise transparent about the

limitations of their research and list them comprehensively in the discussion. They

also importantly discussed the issue of using a vignette centred on sexual intrusive

thoughts about a child which is likely to be more morally reprehensible compared to

sexual intrusive thoughts about an adult. Cathey and Wetterneck (2013) did not

consider the implications of using a child as opposed to an adult in their vignette, yet

it is evidently an important factor to consider when trying to understand why

participants had significantly more negative attitudes towards sexual intrusive

thoughts.

Further to this, several quantitative studies used vignette based methodologies

(Simonds & Thorpe, 2003; Corcoran & Woody, 2008; Pirutinsky et al, 2009;

Warman et al, 2015; Steinberg & Wetterneck, 2016). Vignettes have both strength

and limitations. Whilst vignettes are useful experimentally in understanding attitudes

to different types of OCD, it is incredibly difficult to capture a ‘true’ presentation of

OCD in such a limited framework and therefore the presentation is often simplified.

This could have a negative effect whereby presentations of OCD are misleading,

much like the media portrayals that were described in Fennel and Boyd (2007). In

39

reality, this reflects a trade-off between internal and external validity that is typical of

experimental methodology in the clinical field generally.

In terms of the quantitative studies using a sample of individuals with OCD to

ascertain reasons for delaying help-seeking (Belloch et al, 2009; Marques et al, 2010;

Williams et al, 2012; Poyraz et al, 2015) many used descriptive reporting. This

means that little is known about how powerful each factor is as a barrier to help

seeking, with only one study (Williams et al, 2012) attempting to ascertain this

information. Many studies used a sample of individuals with OCD from mental

health services/outpatient clinics and, as a result, focus on individuals who have

already sought help. These studies also involved face to face interviews which may

be affected by social desirability bias, particularly when the relationship between

researcher and participant is unclear. For example, in Belloch and colleagues (2009)

participants were recruited from outpatient services there is no reference to whether

the researchers worked with that particular service, or whether they were involved in

any particular individual’s care, which could have biased the results.

As noted, there is a group of people who experience symptoms of OCD but

who have not yet accessed services, and who may continue to delay treatment

seeking. It is important to ascertain views on help seeking from this group of people

in particular. Online surveys can be beneficial here in order to minimise social

desirability bias and allow for individuals with a variety of help-seeking trajectories

to participate in research and get their voices heard, particularly samples that are

more difficult to reach. A few studies employed this method (Pirutinsky et al, 2009;

Marques et al, 2010; Hoffner & Cohen, 2012; Steinberg & Wetterneck, 2016) and

this would be considered a strength.

40

A number of the studies researched specific groups of people, whether ethnic groups

(Williams et al, 2012) or religious groups (Pirutinsky et al, 2009). It is important that

this research is conducted as voices from people in these minority groups are likely

to be missed in other research. However, it also raises questions about the

generalizability of the findings. The issue of cultural differences must also be

considered when interpreting the results of Suguira et al (2010) who conducted their

study in Japan. Japan has been documented as a country with particularly high rates

of stigma, compared to other Asian countries such as Taiwan (Ando, Yamaguchi,

Aoki & Thornicroft, 2013) and to western countries such as Australia (Griffiths,

Nakane, Christensen, Yohioka, Jorn & Nakane, 2006). Poyraz and colleagues (2015)

conducted their study in Turkey and Kusularuk and colleagues (2015) in Thailand,

both of which could come with additional cultural beliefs about mental health that

may differ from those in western societies. Many of the studies were conducted in

the US with culturally homogenous samples or where religious diversity was not

recorded. Therefore, it is a strength that some studies have attempted to ascertain

information about stigma in OCD for diverse groups and this may allow future

studies to ascertain what might be universal and what might be culture-bound when

considering stigma.

4.0 Discussion

From the nineteen papers reviewed, eight themes relevant to stigma in OCD were

identified. Firstly ‘wanting to be normal’ suggests that individuals with OCD might

feel a pressure to fit in with society’s expectations of normality. This indicates that,

on some level, respondents might have internalised the notion that they are

‘abnormal’ due to their mental health status which would be evidence for self-stigma.

41

The review indicates that one of the ways an individual can pass as normal is by

concealing their symptoms or diagnosis. This could involve limiting contact to

people who acknowledge and accept the diagnosis and, who, therefore are unlikely to

be rejecting, or by withdrawing from social contact altogether. This provides clear

evidence that Modified Labelling Theory (Link et al, 1989) is relevant to those with

OCD.

Secondly, ‘redefining OCD’ refers to the way individuals talk about their

OCD – some choose to trivialise the disorder to ‘play down’ their symptoms whilst

others choose to medicalise them by using overtly medical language to describe their

symptoms. Others choose to externalise their OCD which allows an individual to

maintain their identity whilst OCD is ‘attacking’ them as an external force. So, in

contrast with the attempts to conceal the symptoms or diagnosis, people with OCD

might attempt to adapt the construction of their illness to fit with what is deemed

socially acceptable. Arguably, in this instance, respondents have also internalised

society’s negative attitudes, thus providing further evidence of the experience of self-

stigma in OCD.

Actively challenging stigma, whether indirectly through participating in

research or directly through social activism, was identified as a theme although there

was very little existing empirical work. To extend understanding of this aspect of

stigma, it would be important for future research to ascertain how individuals

challenge stigma related to OCD, and the effects of this both on the self and on

others.

The current review provides evidence of stigmatisation by others in OCD. In

some cases this stigmatisation might manifest in extreme ways such as through

42

experiences of abuse from relatives who believe that OCD symptoms bring shame

onto the family. Further to this, a number of studies discuss the poor mental health

literacy of the general public specifically around OCD and how this lack of

understanding might underpin negative attitudes. Although participants reported

negative experiences related to employment, education and housing, more research is

needed to gain more specific information about these forms of stigma, how they

manifest and the impact that they have.

Furthermore, the review indicated potential stigmatising attitudes from

professionals with mental health training towards patients with OCD. This varied

from individuals generally feeling misunderstood by their clinicians to a survey of

clinicians expressing openly negative attitudes towards their patients with OCD.

Given that help-seeking is difficult for individuals with OCD due to the nature of

their symptoms, such attitudes are likely to further exacerbate the problem of

treatment seeking in this group. In terms of future research, there appears to be a gap

in the literature around clinician attitudes towards OCD, particularly for a range of

OCD presentations. More research is needed to understand mental health

professionals’ views in greater details. Furthermore, the variation in attitudes towards

OCD that has been demonstrated in some of the literature (Kusularuk et al, 2015;

Steinberg & Wetterneck, 2016) is likely to stem from a lack of understanding about

OCD. It may be that clinicians require additional training about less common

presentations of OCD in order to reduce stigmatising attitudes. Future research might

assess the impact of such training and the most effective ways of increasing clinician

understanding of OCD.

43

As indicated in the literature, the current review supports the contention that

stigma is of particular concern in OCD as it is a barrier to help-seeking, with several

studies reporting stigma as a common reason for delaying treatment. The studies in

this area generally looked at help-seeking for OCD as a whole, not considering the

diversity of presentations within this diagnosis and this is one of the limitations of

these studies. It is possible that there may be variation in help-seeking delay and

associated reasons for this for different types of OCD and this is an area that future

research could aim to investigate. Whilst vignette studies have focussed on attitudes

towards help-seeking based on different types of OCD presentation, this work has

been conducted with non-patient samples. More research is needed to understand the

particular issues associated with help-seeking for those people with OCD who

experience different presentations of the disorder.

Relating to the aforementioned issue of mental health literacy, the review

further identified media portrayals of OCD as factor that could potentially prevent or

reinforce stigma. Portrayals of OCD are often stereotyped to specific presentations

such as compulsive cleaning or checking. Very rarely are taboo intrusive thoughts

portrayed, such as those with sexual, blasphemous or harm-related themes. The

review suggests that individuals with OCD find that the media does not accurately

represent people with the disorder. As a result, the general public are given

potentially misleading or incomplete information and this is likely to influence their

attitudes and understanding of it. Some studies found that media content portraying

characters with OCD positively, can have a positive effect on individuals

experiencing symptoms, by increasing self-esteem, increasing the likelihood that

44

someone will seek help, and also by reducing desired social distance in the general

public.

The current review suggests that it is perhaps overly simplistic to focus on

stigma in relation to OCD in general. In addition to evidence suggesting a stigma

hierarchy operates between conditions, with OCD being perceived as one of the least

stigmatising disorders (Suiguira, Sakamoto, Kijima, Kitamura & Kitamura, 2010),

the evidence suggests some presentations of OCD are stigmatised to a greater degree

than others. In other words, there is a stigma hierarchy within OCD itself. Sexual

intrusive thoughts were found to be the most stigmatised presentation, with

individuals experiencing these thoughts being least likely to report them, and desired

social distance being highest for people experiencing these thoughts. However, in

light of the critical appraisal, there are some factors that should be considered when

interpreting these results, mostly around the generalizability of findings. Only one

study investigated a stigma hierarchy explicitly, and this was conducted in a non-

western country, where attitudes towards mental health may differ from western

societies and therefore levels of stigma towards OCD may be different in the UK. It

was earlier discussed that psychology undergraduate students are not representative

of the general population and therefore it is possible that the rates of stigmatising

attitudes found in these studies could be an underestimate. It is possible that samples

which are more representative of the general population would indicate higher rates

of negative attitudes. It would be important for future research to consider utilising

samples that more broadly represent the general population for this reason.

Taken together, the evidence reviewed indicates that stigma presents a

significant barrier to help-seeking in OCD. Moreover, even once a person has sought

45

help they may continue to face stigma from society and also from professionals.

Warman and colleagues (2015) recently produced promising evidence that education

interventions for the general public can be useful for reducing stigmatising attitudes

towards mental health conditions including OCD. Given this is the only study of its

kind, further research is required to test education interventions for a range of

different OCD presentations. For example, public attitudes to lesser researched

presentations such as sexual intrusive thoughts might be usefully investigated

because, as noted, these forms of OCD are not portrayed within mainstream media

and might be associated with more negative attitudes.

The findings from this review demonstrate that people with a diagnosis of

OCD experience self-stigma, and also anticipate stigma from others. However, there

is no evidence explicitly looking at the effects that stigma has on the wellbeing or

treatment outcomes for people with OCD. This work has been carried out within

psychosis and depression (Sirey et al, 2001; Yanos, Roe, Markys & Lysaker, 2015),

and it is important to assess in other long-term conditions such as OCD.

As noted, the general public are likely to learn about OCD from mass media

representations. Therefore, it is essential that the media are able to portray mental

health difficulties responsibly, accurately, and sensitively in order to avoid

reinforcing any stigmatising views that are held. It is one suggestion that the media

attempt to portray less stereotyped presentations of OCD such as those with taboo

intrusive thoughts. For professionals, it is important to recognise any negative beliefs

and assumptions held about individuals with OCD, and to use supervision to explore

these in order to minimise their impact on the quality of care provided. It is also

important to acknowledge the length of time a person may have been struggling with

46

symptoms before seeking help and to recognise how difficult it may be when the

personal first embarks on treatment. It would be helpful to also ascertain why the

individual is seeking treatment at the current time if they had delayed seeking help

previously. Importantly, clinicians should be aware that there is stigma associated

with OCD and that individuals may have negative experiences of this.

Whilst this review tried to encompass all literature around stigma in OCD, it

is possible that some research has been missed due to publication bias. The current

review did not include unpublished literature; however, it would not have been

possible to do so systematically. Further to this, this review looked specifically at

OCD as a disorder. There may be research that looked at stigma in a number of

mental health disorders simultaneously, which included data for OCD. Therefore,

unless a paper referred specifically to OCD and stigma, it would not have been

included in this review.

4.1 Conclusions

In summary, it would appear that there is evidence for self-stigma and

stigmatisation from others in obsessive compulsive disorder. This is evident in the

substantial length of time that individuals with OCD delay treatment and findings

that anticipated stigma is commonly cited as one of the predominant reasons for

delaying treatment. Qualitative studies with individuals diagnosed with OCD present

data to suggest that people with OCD are aware of stigma and fearful of it. They

carry out behaviours designed to protect themselves from the stigmatising beliefs of

others in society, for example ‘passing as normal’ and ‘redefining OCD’. Others

47

have direct experience of receiving prejudice or discrimination from members of the

public, relatives and professionals due to their symptoms of OCD. Further to this,

studies of clinicians working with OCD have found that even mental health

professionals can hold stigmatising beliefs about patients. Firstly, it is important for

clinicians working with patients diagnosed with OCD to recognise any negative

attitudes they may hold and to use supervision to explore this as appropriate. It is

also important to recognise that it may have taken months or even years for an

individual to decide to seek help, and that they may have directly experienced

prejudice or discrimination as a result of their OCD symptoms or diagnostic label, or

be fearful that this will happen in the future. It is important that clinicians should be

sensitive to this. Future research is needed to develop anti stigma interventions and to

ascertain the effects of these in order to improve the experience of individuals with

varying presentations of OCD, not just those that are more common.

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Appendix A

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Part Two – MRP Empirical Paper

Impact of a brief education on stigma related to sexual intrusive thoughts about children

Word Count: 9948

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Abstract

Background: Individuals with OCD tend to delay help seeking due to fear of stigma,

particularly individuals who experience sexual intrusive thoughts. Few studies have

examined sexual intrusive thoughts about children (sometimes called pedophile-

OCD). The current study assessed the effectiveness of a brief education intervention

in reducing stigma towards a person experiencing such thoughts.

Method: 120 participants took part in an online survey. Participants were shown a

vignette describing a target individual who experienced sexual intrusive thoughts

about a child. Participants completed stigma measures (perceived dangerousness,

perceived unpredictability, and desired social distance), and assigned a diagnostic

label before and after being shown educational information about OCD and

Pedophilic Disorder. Participants also completed six open-ended questions about

their decision making.

Results: Ninety participants (75%) assigned an initial diagnosis of pedophilia.

Following the education, more than half of these changed their diagnosis from

pedophilia. A McNemar’s test demonstrated that a significant number of individuals

moved away from a pedophilia diagnosis post education. Paired comparison tests

demonstrated that perceived dangerousness and desired social distance from the

target decreased significantly following the intervention. Repeated measures

ANOVA demonstrated that the group of participants who moved away from an

initial pedophilia diagnosis showed a greater decrease in stigma ratings than those

who did not.

Discussion: Based on the mere presence of a sexual thought about a child, most

individuals assigned a label of pedophilia. However, initial judgments and level of

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stigma were amenable to significant change following a brief education intervention.

Future research may benefit from examining the experiences of people with

pedophile-OCD directly as well as ascertaining the most effective style of psycho-

education materials to promote anti-stigma messages.

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1.0 Introduction

1.1 Obsessive-Compulsive Disorder (OCD)

Obsessive-Compulsive Disorder (OCD) is an ego-dystonic disorder meaning

that the individual’s thoughts and behaviours are in conflict with their personal needs

and goals, or their ideal self-image. OCD is characterised by the presence of

obsessions, compulsions or both. Obsessions are defined as recurrent and persistent

thoughts, images or urges which cause distress to the individual. Compulsions are

defined as repetitive behaviours or mental acts that an individual feels compelled to

perform in response to an obsession (Diagnostic and Statistical Manual 5th Edition;

American Psychiatric Association, 2013). OCD has a lifetime prevalence rate of

2.3% (Kessler, Petu-Khova, Sampson, Zaslavsky & Wittchen, 2012), with studies in

the UK demonstrating prevalence rates of 1.1% (Torres et al, 2006). In the recent

changes to the DSM, OCD was moved from the anxiety disorders category to its own

subcategory ‘Obsessive-Compulsive and Related Disorders’ most likely to reflect the

broad spectrum of manifestations of OCD. The World Health Organisation has

ranked OCD in the 10 most debilitating conditions by lost income and poorer quality

of life (Veale & Roberts, 2014).

Research indicates that individuals with a diagnosis of OCD have a

substantial impairment in quality of life and psychosocial functioning, with one third

of the sample in one particular study being unable to work (Eisen et al, 2006). The

prevalence of comorbid mental health difficulties among those with a diagnosis of

OCD is around 80% (Lochner et al, 2014). The rates of suicidal ideation in

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individuals with a diagnosis of OCD is between 10%-63.5% (Kamath, Reddy &

Kandavel, 2007; Angelakis, Gooding, Tarrier & Panagioti, 2015) with the prevalence

of attempted suicide between 1%-46.3% (Angelakis et al, 2015). There are limited

studies that comment on the prevalence of completed suicide in OCD, but it is

evident from the literature that those who experience symptoms of OCD also

experience extremely high levels of distress.

1.2 OCD Subtypes

There is some consensus in the literature that OCD is thought to be a

heterogeneous condition. As a result, efforts have been made to classify the disorder

into subtypes. Initially three subtypes were proposed: i) symmetry/hoarding, ii)

contamination/cleaning and iii) pure obsessions (Baer, 1994). However, in the largest

study to date, involving a meta-analysis of 21 studies totalling over 5000 participants

using the Yale-Brown Obsessive Compulsive Checklist, four subtypes were

proposed: i) Forbidden thoughts such as aggression, sexual, religious and somatic

obsessions alongside checking compulsions, ii) Symmetry obsessions and repeating,

ordering or counting compulsions, iii) Cleaning and contamination, and iv) hoarding

obsessions and compulsions (Bloch, Landeros-Weisenberger, Rosairo-Campos,

Pittenger & Leckman, 2008). More recently, in the latest DSM (DSM-V; APA,

2013), hoarding has been classified separately in recognition that its phenomenology

is different in important ways from OCD.

1.3 Forbidden thoughts

Forbidden intrusive thoughts in OCD are described as being aggressive,

sexual or religious in nature. There is some debate in the literature as to whether

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these thoughts are purely obsessional forms of OCD or whether they are

accompanied by associated compulsions. It is generally acknowledged that

individuals experiencing this subtype of OCD are likely to perform more covert

compulsions, such as mental rituals or thought suppression, and that they are likely to

believe that it is both important and possible to control one’s thoughts (Brakoulias et

al, 2013). Evidence suggests that individuals experiencing forbidden obsessions are

more likely to seek reassurance, suffer a greater level of distress, and have a history

of substance misuse possibly as a way of coping with the distress of these

obsessional thoughts (Brakoulias et al, 2013). Interestingly, most research in OCD

has tended to focus on individuals who experience the cleaning/contamination

subtype of OCD, accounting for 75% of samples in treatment studies (Sookman,

Abramowitz, Calamari, Wilhem, & McKay, 2005). Despite being associated with

greater levels of distress, there is a dearth of research to date around aggressive,

sexual or religious obsessions in comparison with other manifestations of OCD.

Forbidden thoughts are common among individuals with a diagnosis of OCD,

with prevalence rates ranging from 14%-41% (Ruscio, Stein, Chiu & Kessler, 2010;

Glazier, Calixte, Rothschild & Pinto, 2013). In children and adolescents, the

prevalence rates are thought to be between 12.5-81% for aggressive thoughts, 4-27%

sexual obsessions and 4-29% religious obsessions (Geller et al, 1998). Forbidden

thoughts have been found to exhibit unique characteristics compared to other

subtypes although treatment outcomes are equally as positive. Significant

improvement can be made with standard cognitive behavioural therapy treatment

(Chase, Wetterneck, Bartsch, Leonard & Reimann, 2015).

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Sexual obsessions can take many forms such as intrusive sexual thoughts

about friends, family, children, violent sexual thoughts or thoughts about sex with

animals. The prevalence of sexual obsessions in individuals diagnosed with OCD

ranges from 6% (Baer, 2001) to 24% (Foa et al, 1995). One study of 293 individuals

diagnosed with OCD found that 24.9% reported experiencing sexual obsessions in

the past and 13.3% reported current sexual obsessions (Grant et al, 2006). There was

a statistical trend towards higher depressive symptoms in people who experienced

sexual obsessions possibly indicating higher levels of distress. There is also evidence

to suggest that individuals experiencing forbidden intrusive thoughts are at higher

risk of suicide (Torres, 2011; Dell’Osso et al, 2012).

There is very limited research around sexual intrusive thoughts about children

specifically. Thoughts of this nature are referred to more generally within the label of

‘sexual intrusive thoughts’. Pedophilic thoughts in OCD differ from those in

paraphillic disorders by their ego-dystonic nature, “The paraphiliac has often

performed the behavior, wants to repeat it, and feels sexual arousal. The obsessive

has not performed it, wants to stop thinking about it, and feels disgust and fear over

his inability to control his thoughts on the subject” (Gordon, 2002 p. 346). One case

study described a 35-yr old man who experienced recurring intrusive images of

sexually molesting his young son, with accompanying thoughts about whether this

would be arousing. This man felt compelled to imagine the sexual scenario until he

felt certain that he was not aroused by it, and did so by checking himself for signs of

sexual arousal. This resulted in feelings of anxiety, depression and shame, and a

planned suicide attempt. Following a residential 3-month course of CBT and SSRI

medication, substantial progress was reported (O’Neil, Cather, Fishel & Kafka,

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2005). Other accounts of sexual intrusive thoughts about children are evident in

online internet support forums for OCD, where thoughts of this nature are often

described as ‘Pedophile-OCD’ or ‘POCD’. Users of such forums report significant

distress, suicidality, poor quality of life, breakdown of relationships, breakdown of

employment as well as shame, stigma and an intense fear that their intrusive thoughts

might be true. There is a great deal of information available on internet forums

around this issue, particularly on www.ocdaction.org.uk. Information posted on these

forums is publicly available and it is not necessary to be a member of the site to

access content. There is a stark contrast between the wealth of experiences of POCD

documented online, compared with the lack of empirical research

1.4 Disclosure and Stigma Issues in OCD.

One fifth of individuals with a diagnosis of OCD delay or avoid seeking help

due to fears about what others may think (Goodwin, Koenen, Hellman, Guardino &

Struening, 2002). The average length of delay in seeking help for OCD symptoms is

reported to be over ten years in one study (Glazier at al, 2013). A study looking at

reasons for treatment seeking delay found that 35% of individuals delayed seeking

help because they felt ashamed of the content of their thoughts (Belloch, del Valle,

Morillo, Carrio, & Cabedo, 2009).

Studies of anticipated stigma in OCD have reported differences by OCD

subtype. For example, obsessions around themes that are morally reprehensible are

less likely to be reported (Simonds & Thorpe, 2003; Cathey & Wetterneck, 2013).

Cathey and Wetterneck (2013) argued that sexual obsessions are likely to be

underreported, under-recognised and under-treated than other types of obsessions,

finding that individuals were less likely to disclose sexual obsessions due to concerns

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about social rejection in particular. They suggest also, that even in individuals with a

recognised history of OCD, obsessions of a sexual nature may not be reported.

Individuals may also be concerned about the reaction of the clinician. Mental health

professionals sometimes lack understanding of unacceptable/taboo obsessions and

can misdiagnose/misclassify them. Glazier and colleagues (2013) found that sexual

obsessions about children in particular were commonly misidentified by clinicians,

with 39% of participants attributing these intrusive thoughts to pedophilia.

Recommended treatment for OCD relies on testing a person’s beliefs in reality but

this is unlikely to happen unless a person is able to disclose their beliefs. Stigma is

evidently a barrier to disclosure. It is therefore important to understand more about

this and to develop anti-stigma strategies which would allow more prompt support

and intervention.

The foregoing literature indicates that individuals who experience forbidden

intrusive thoughts, and particularly those with sexual themes, are likely to anticipate

social rejection and perhaps face misdiagnosis and possible legal sanctions should

they disclose the content of their thoughts. It is also evident that clinicians might fail

to delineate thoughts associated with OCD from other conditions. Therefore,

forbidden intrusive thoughts are likely to be under-reported or not reported at all

leaving the individual to manage significant distress. Public perception of symptoms

of mental health problems is a critical aspect of facilitating treatment access, as fear

of negative evaluation is a significant barrier to help-seeking (Simonds and Thorpe,

2003). Assessing public attitudes to OCD symptoms is important so that any

misperceptions can be targeted in public education campaigns. Warman and

colleagues (2015) looked at the impact of a brief psycho-education intervention on

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stigma relating to violent thoughts in OCD. Participants were given three vignettes

describing a young man who was experiencing violent thoughts towards his niece.

Diagnosis was varied across the vignettes: either a doctor had given a diagnosis of

OCD, a diagnosis of Schizophrenia, or no diagnosis. Participants were asked to

comment on whether they thought the diagnosis fit with the vignette they were given.

The study showed that prior to the education intervention, OCD was not seen as a

credible diagnosis for obsessional violent thoughts. In contrast, following the

intervention, OCD was seen as the most credible diagnosis, above schizophrenia.

The psycho-education intervention simply consisted of the DSM-5 criteria for OCD

and schizophrenia along with explanations of key terms such as obsessions,

compulsions, positive and negative symptoms. Additionally, social distance,

perceived dangerousness and perceived unpredictability, as measures of stigma, were

assessed before and after psycho-education. Following the intervention, participants

had significantly less negative attitudes towards the target, which was accounted for

by the shift to determining that the target had a diagnosis of OCD as well as positive

changes in stigma measures.

Individuals with POCD fear that the mere presence of a thought about sexual

activity with a child means that they are a pedophile. Worry that other people,

including professionals, will also think they are a pedophile is likely to prevent them

from seeking help. Following Warman et al’s (2015) conclusion that other types of

stigmatising OCD presentations need to be investigated, the current study used a

vignette-based design to assess whether people in the general population would

consider the mere presence of a thought about sexual activity with a child to be

indicative of pedophilia, whether they would find OCD a credible diagnosis for a

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hypothetical person experiencing such thoughts, and whether a brief information

intervention is effective in promoting less stigmatising views when applied to sexual

obsessions. Reduced stigma was operationalized as changing from a diagnosis of

pedophilia following the intervention as well as a decrease in scores on stigma

measures. Given that these obsessions are associated with the most distress and are

likely to inhibit disclosure, assessment of general public perception is important in

guiding attempts to reduce potential stigma associated with misclassification. The

current study aimed to test the effectiveness of psycho-education in a sample of the

general population rather than psychology students who might have greater

awareness of mental health issues.

1.5 Research Hypotheses

In the current study the following hypotheses were tested:

Hypothesis 1: The proportion of participants who diagnose the target person in the

vignette as being a pedophile will decrease after the brief information intervention.

Hypothesis 2: The brief information intervention about OCD and pedophilia will

reduce stigma (as measured by desired social distance from the target in the vignette

and their perceived unpredictability and dangerousness) associated with sexual

intrusive thoughts about children.

Hypothesis 3: Participants who revised an initial diagnosis away from pedophilia

following the information intervention will show a greater decrease in stigma

towards the target than other participants.

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2. Method

2.1 Design

A within-participants experimental design was used. All participants were shown the

same vignette describing a male who experienced sexual intrusive thoughts about a

child. Participants were asked to assign an initial diagnosis based on the vignette and

to complete measures assessing stigma towards the male in the vignette. All

participants received the same education intervention after which they were asked to

re-read the vignette again. Participants were then asked to assign a diagnosis for a

second time, as well as completing stigma measures once more.

2.2 Participants

Participants were recruited through snowball sampling on social media websites (See

Appendix A). The study was also advertised on a psychology research website (

www.onlinepsychresearch.co.uk) with appropriate permissions secured before

advertising. In order to participate, participants had to be over 18 years old and be

English speaking. There were no other exclusion criteria. Participants were offered

the opportunity to be entered into a prize draw for one of three £50 Amazon gift

vouchers following completion of the study. The sample size calculation for the

current study was calculated using G*Power (Faul, Eldfelder, Buchnet & lang,

2007), (alpha=.05, power =.80) drew on the reported means and SD’s for stigma

measures and the proportions of participants endorsing a diagnosis of either OCD or

Schizophrenia in Warman et al (2015). Whereas Warman et al. focused on a change

in the proportion of participants diagnosing Schizophrenia to OCD, the current study

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focused on the change in the proportion of participants diagnosing pedophilia to any

other diagnosis on the basis that this represented a reduction in stigma. In order to

test Hypothesis 1 using a McNemar test for change in proportions, the calculation

suggested n=115 was necessary to achieve an odds ratio of 3. To test Hypothesis 2,

the calculation suggested n=35 participants was required to detect an effect size of

0.5 using a paired comparison test. In order to test Hypothesis 3, the calculation

suggested that n=34 participants was required to detect an effect using repeated

measures ANOVA with one within-participants factor (pre vs post education) and

one between-participants factor (group – either changed from pedophile diagnosis or

did not change). Therefore, the target sample size was N=115.

2.3 Materials and Measures

2.3.1 Vignette (Appendix B). The vignette presented in the study was based

on the vignette in Warman et al (2015). All participants were shown the same, brief

vignette about a young male who is experiencing sexually inappropriate thoughts

about a child.

“Steve is a 25-year old male. Often when he is with his six-year old niece he has

thoughts about touching her inappropriately. This has been going on for some time”

This vignette is deliberately limited in information in order to represent the

fundamental struggle that individuals experience in POCD – that the presence of a

thought alone makes them a pedophile and that others will judge them as being a

pedophile if they were to express their thoughts aloud.

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2.3.2 Participant assigned diagnosis. The current study enhanced the design

used in Warman et al’s (2015) study. Specifically, Warman and colleagues asked

participants to indicate if they found the initial doctor’s diagnosis credible. They

found that giving participants an initial label (i.e. OCD, schizophrenia or no label) in

fact had no effect on participants’ social distance, dangerousness or unpredictability

ratings. Instead, it was the participants’ self-determined diagnosis that had an impact

on these variables rather than the label assigned by a hypothetical doctor.

Additionally, the vignette specified the individual had been diagnosed on a recent

visit to their doctor. It was considered this element has limited ecological validity as,

at least in the UK, a general practitioner would not make such a diagnosis. For these

reasons, in the current study participants were asked to supply their own ‘best guess’

diagnosis from a list of options, one of which was pedophilia. The term ‘best guess’

was used to recognize that participants in the general population are likely to find

this more accessible.

In light of this, after reading the vignette, participants were asked to assign a

diagnostic label to the target in the vignette using the question: “We know that you

may not have had any mental health education or training but, if you had to make

your best guess, what diagnosis do you think this person should be given. Even if

you are not sure, please tell us what your best guess would be:”. Participants were

then given three options 1) Pedophillic Disorder (otherwise known as a pedophile),

2) OCD and 3) Other (please specify). Following the education intervention, the

diagnosis options included ‘don’t know’ in addition to the previous options. This

allowed for participants to move to a position of uncertainty.

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2.3.3 Stigma measures (Appendix C). As in Warman et al’s (2015) study,

stigma was operationally defined as desired social distance from the person in the

vignette and their perceived dangerousness, and perceived unpredictability. The

Social Distance Scale (SDS; Link, Cullen, Frank and Wozniak, 1987) is a 7-item

measure. Each item is rated on a 4-point scale ranging from 1 (definitely willing) to 4

(definitely unwilling) and is used to determine the extent to which an individual is

willing to have a target individual fulfill a number of different social roles such as

neighbour or caretaker of a child. Higher scores on this measure indicate a desire for

greater social distance, and therefore more stigmatizing attitudes towards the target

individual. The SDS has been reported to have good psychometric properties with

internal consistency of 0.92 (Link et al, 1987) and good construct validity (Link,

Yang, Phaelan & Collins, 2004). Cronbach’s alpha for the SDS in this study was

0.93 indicating a high level of internal consistency, which is consistent with previous

findings.

Perceived dangerousness and unpredictability were measured using single

items - “How likely do you think it is that Steve would be dangerous towards

others?” and “How likely do you think it is that Steve would behave in an

unpredictable way towards others?”. Both were items were rated on 0-100 scale (0-

not at all likely, 100- very likely).

2.3.4 Education intervention (Appendix D). Warman et al’s psycho-

education was very limited, comprising a list of DSM features. In the current study,

the DSM-V criteria for OCD and Pedophillic disorder were adapted such that the

information was presented in a concise but more person-centred way. Additionally,

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the information presented about schizophrenia (obtained following personal

communication with Warman) did not focus on intrusive thoughts whilst the

information about OCD did. It could therefore be argued that the finding that most of

the sample switched their diagnosis to OCD was unsurprising given that the features

in the vignette did not correspond to schizophrenia. In contrast, in the current study,

both the OCD and pedophilia information was focused on the occurrence of

unacceptable thoughts.

Psychoeducation is an important part of the therapeutic process in

psychological therapies. It is typically used as a way of normalising and validating a

person’s experiences, and encouraging empathy and compassion for the self

(Westbrook, Kennerley and Kirk, 2011).  The education materials in the current

study built on the psycho-education material delivered in Warman et al (2015) but

aimed to make the information more person-centred and less medical. It was felt that

this would be important in order for the participant to see beyond a list of symptoms

that form the diagnostic criteria. This study aimed to present a narrative which would

allow the participant to envisage a real person experiencing distress, in the hope that

this will allow for greater increase in empathy. This was done by providing

paraphrased DSM criteria for OCD and Pedophillic Disorder, and included an

example of how this may manifest in real life, and the impact of these symptoms on

quality of life. The current study does not attempt to ascertain the most effective

ingredients of psychoeducation, but previous research from the field of social

psychology tells us that increased empathy can lead to increased prosocial behaviour

and more positive intergroup relations, which in turn can reduce negative attitudes

(Batson et al, 1997). Therefore, we would anticipate that if the psychoeducation is

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successful, one of the mechanisms of this could be due to an increase in empathy for

the target leading to a reduction in overall negative attitudes.

The material for OCD and Pedophilia was matched for length and was not

specifically based on the target, but provided a more general description of ‘people

with OCD/Pedophilic Disorder”. Both sets of information were presented to the

participants on the same screen to allow them to compare and contrast the

information in order to make a ‘best guess’ second diagnosis.

2.3.5 Cognitive responses. A final enhancement in the current study was to

collect some information on participants’ decision-making around diagnosis. Whilst

Warman et al. (2015) found that participants changed their diagnosis, they did not

collect any information on why they might have done so. Such information would be

useful in further developing and targeting education around OCD.

Participants were asked to think and write about their decision making

process with a series of six open-ended questions (See Appendix E). These questions

aimed to ascertain what information from the vignette influenced participants’ initial

diagnostic label selection, and later on why their decision regarding a diagnostic

label either did or did not change. This allowed participants to comment on whether

information from the education contributed to their decision making, or whether

other factors were involved. Finally, participants were asked for any general

comments on the study.

2.4 Procedure

The online survey as constructed using Qualtrics (Qualtrics, 2017). Upon opening the

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online survey, participants were shown an information page with further information

about the study and contact details for the researchers (See Appendix F). They were

then presented with a consent form (See Appendix G). As part of this form,

participants were asked whether they consented for their information to be used in

analysis should they withdraw from the study before completion. Following this,

participants entered demographic information about themselves. This information

included age, gender, ethnicity, relationship status, student status, education level,

current job title, whether they had children and number of children, and the country

they were completing the study from. Participants were then shown the vignette and

asked to assign their first ‘best guess’ diagnosis from several options. The next

screen displayed the stigma measures: perceived dangerousness and unpredictability

ratings and the social distance scale. Participants then read the information regarding

diagnoses of Obsessive Compulsive Disorder and Pedophillic Disorder, presented

respectively on the same screen to allow comparison. Participants were then asked to

read the vignette for a second time, assign their second ‘best guess’ diagnosis and

complete the stigma measures. Participants were then asked to complete the

cognitive responses, which ascertained information regarding their decision making

process. These questions were optional. Following this, participants were shown a

debrief screen (See Appendix H) which outlined the purpose of the study and

provided contact details of relevant organisations should a participant become

worried about their own mental health during the course of the study. The prize draw

screen was presented following the debrief.

2.5 Ethical Considerations

The study received Favourable Ethical Opinion from the Faculty of Health and

82

Medical Sciences Ethics Committee at the University of Surrey (See Appendix I).

Participants provided informed consent and were free to withdraw at any time. As

part of the information sheet, participants were informed that the study was assessing

attitudes towards people who had sexual thoughts about children, and therefore

participants were aware of the subject area before taking part in the survey.

Participants were provided with a debrief screen which contained information for

relevant organisations should any participant be concerned about their own mental

health having read the education materials.

2.6 Data Analysis

2.6.1 Quantitative data analysis. The IBM Statistical Package for Social

Sciences (SPSS) version 22 (IBM, 2013) was used to analyse data. There were no

missing data from the SDS, perceived dangerousness/unpredictability or participant

assigned diagnosis. The SDS items were summed to create a total SDS score. New

variables were computed to represent the difference in score for all three stigma

measures pre and post education. These difference score variables were checked for

normality. Visual inspection of histograms suggested some degree of non-normality.

As a result, the mean and median were computed for each of the stigma difference

score variables and were not markedly different, nor were these variables markedly

skewed. Therefore, both parametric and non-parametric tests were conducted and are

reported below in order to assess whether the parametric findings are sufficiently

robust.

2.6.2 Qualitative data analysis. In order to analyse the cognitive responses

that were provided by participants, an inductive content analysis was conducted

using the process described by Elo and Kyngas (2008). Data were read through

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multiple times and each response was then coded based on the key message within

that response. Once each response had been coded and assigned a category based on

the key message, response categories were looked at to ascertain whether they

formed part of a larger category. For example, many categories that emerged were

around specific elements of the education, and therefore these responses were coded

into sub-categories based on the specific element they mention. These sub-categories

formed part of a larger category of ‘the information provided’ which was then

created in order to describe these sub-categories. Each response was coded into one

category.

3.0 Results

3.1 Participants

A total of 171 people accessed the study information page. Of these, 134 provided

consent to take part. Data from 120 participants could be used in the analysis (110

provided complete data and 10 provided data for all questions except the cognitive

responses). The data of the remaining 14 could not be used in the analysis as they

withdrew from the study before providing sufficient data. In summary, the sample

had a mean age of 30.3 years and the majority were female. The majority of

participants also reported being single or in a cohabiting relationship, being educated

to undergraduate degree level and identified as being White British. Just over a

quarter of the sample stated that they had children. A summary of sample

characteristics is provided in Table 1.

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Table 1: Summary of demographic information provided by participants (N=120)

Age, years; Mean (SD) 30.3 (9.9)

Number of children; Mean (SD) 1.95 (0.87)

Identify as being a parent N (%) 34 (28.3)

Gender N (%)

Male 19 (15.8)

Female 100 (83.3)

Other 1 (0.8)

Relationship Status N (%)

Single 37 (30.8)

In a relationship - cohabiting 32 (26.7)

In a relationship – not cohabiting 20 (16.7)

Married 28 (23.3)

Separated 2 (1.7)

Divorced 1 (0.8)

Education Level N (%)

No formal qualifications 2 (21.7)

GCSE or equivalent 23 (19.2)

A Level or equivalent 17 (14.2)

Undergraduate degree 43 (35.8)

Postgraduate degree 35 (29.2)

Ethnicity N (%)

White British 104 (86.7)

Other 16 (13.3)

Location completing the study N (%)

UK 107 (89.2)

Non UK (USA, Canada, Australia, Sweden, Spain, Japan,

South Africa and Caribbean Islands)

13 (10.8)

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Participants were asked to provide their job title, or degree title in order to assess

how many participants might have had an awareness of psychological or mental

health issues. The majority of the sample did not have a psychology degree or

currently work in mental health services, with only 15.8% (n=19) of the sample

stating a job title or degree title that would indicate they had prior knowledge of

mental health.

3.2 Hypothesis 1: The number of participants who diagnose the target in the vignette

as being a pedophile will decrease after the brief information intervention.

One hundred and twenty participants assigned both a pre education and post

education diagnosis. Prior to the education intervention, 75% of the sample assigned

a diagnosis of pedophilia to the target. Table 2 displays the change in participant

assigned diagnoses pre and post education.

Table 2: Change in participant assigned diagnosis pre to post education (N=120)

N %

Pedophile Both 34 25.4

Pedophile to OCD 22 16.4

Pedophile to Other 4 3

Pedophile to Don’t know 30 22.4

OCD Both 13 9.7

OCD to Pedophile 4 3

OCD to Other 0 0

OCD to Don’t Know 3 2.2

Other Both 2 1.5

Other to Pedophile 1 0.7

Other to OCD 4 3.0

Other to Don’t Know 3 2.2

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Of the 90 participants who assigned a diagnosis of pedophilia, only 34

remained with the diagnosis following the education intervention. Of the 56

participants who changed their diagnosis, the majority moved towards ‘don’t know’

(n=30), followed by a move towards an OCD diagnosis (N=22). Only 5 participants

moved to a pedophilia diagnosis from a non-pedophilia diagnosis following the

education.

To test Hypothesis 1, a McNemars test was used. Initially, this involved recoding the

data such that four groups of participants could be identified: those who retained a

pedophilia diagnosis, those who moved from a diagnosis of pedophilia to any non-

pedophilia diagnosis, those who retained any non-pedophilia diagnosis, and those

who moved from any non-pedophilia diagnosis to a pedophilia diagnosis. The coding

was done in this way because given that people who experience sexual intrusive

thoughts about children are most fearful of being labelled a pedophile, a change from

a pedophile diagnosis to any other diagnosis was considered to represent a positive

change. Importantly, if a participant selected ‘other’ at either pre or post education,

they were asked to specify further. Examination of these responses (Appendix F)

suggested uncertainty or specification of general mental health issues or psychosis

but, crucially, not pedophilia. This supported aggregating OCD, ‘Don’t Know’ and

Other responses given that none was reflecting a diagnosis of pedophilia. The

number of participants in of each the four groups is shown in Table 3. The

McNemars test was highly significant (x2=40.98, p<.001) and indicated that a

significant number of participants changed from a diagnosis of ‘pedophile’ to one

less stigmatizing following the education intervention. Therefore, Hypothesis 1 was

supported.

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Table 3: Number of participants endorsing pedophile vs. any other diagnosis pre and post education (n=120)

Post-Education: OCD, Don’t Know or Other

Post Education: Pedophile Diagnosis

Pre Education: OCD, Don’t Know or Other

25 5

Pre Education: Pedophile Diagnosis

56 34

3.2.1 Cognitive responses about diagnostic choice. To supplement the

quantitative information about participants’ pre and post education diagnoses, six

open-ended questions were asked regarding how participants made decisions around

assigning a diagnosis and why they either changed their diagnosis or retained it. Of

the six questions, there was some overlap in what these questions addressed and

therefore information was extracted and organized around 3 key themes i) How

participants made their initial diagnosis, ii) Why participants changed their diagnosis

and iii) why participants did not change their diagnosis. The tables below display this

information for each of these three themes, along with a further table highlighting

information participants who responded ‘don’t know’ would have needed in order to

have made a decision. If a participant responded with the same information multiple

times across questions, this was coded only once. Each table contains the categories

identified and one or more quotes to illustrate each category, along with the number

of participants who endorsed a particular diagnosis or change in diagnosis. One

hundred and ten participants provided a response to at least one of the six cognitive

response questions. Given that some questions would not have applied to all

participants (e.g. questions about why a participant changed a diagnosis if they did

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not do so) the number of respondents does not equal 110 participants for each

question.

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What informed participants’ initial diagnosis?

Table 4: Influences on initial diagnosis

Pedophile N OCD N Other N Total 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 about whom he thought”

0 0 2 2

90

Pedophile N OCD N Other N Total N

3. Gut instinct “Instant reaction to hearing an adult has had sexual thought about a child”

6 0 0 6

4. Not enough information

“Not enough information to make a diagnosis” – Participant who assigned an initial diagnosis of pedophile.

“ There was too little information to answer effectively, I chose to believe the best in Steve” – Participant who assigned an initial diagnosis of OCD.

3 2 0 5

5. Personal qualities of the participant (eg, not wanting to make a judgement)

“My uncertain nature” – Participant who responded ‘other’ at initial diagnosis.

0 0 1 1

6. Participant had imposed their own preconceptions onto the vignette.

“The inappropriate touching of a child”

6 0 0 6

7. Irrelevant answer 7

8. No response 49

91

In order to make their decisions regarding initial diagnosis, most participants used

the information from the vignette, with the majority interpreting the information

provided to inform a pedophilia diagnosis based on the presence of sexual thoughts

about a child. Interestingly, some participants chose to focus on what was not written

in the vignette and considered the difference between thought and action, using this

information to assign an OCD diagnosis or to respond ‘other’. Some participants

considered the duration of the thoughts as important. This particular aspect was

perceived to be related to pedophilia, whereas the target having thoughts about a

family member seemed to introduce uncertainty in the two participants who endorsed

this category as they both responded ‘other’. A number of participants reported that

there was not enough information to inform a diagnosis, and yet assigned a diagnosis

of pedophile. However, other participants who also acknowledged a lack of

information used this to assign a diagnosis of OCD. A number of participants relied

on prior knowledge of the two diagnoses in order to inform their decision making,

and largely this was around prior training or work-related experience. This category

was endorsed by participants who assigned both a pedophile and OCD diagnosis.

One participant described their uncertain personality as the reason for responding

‘other’ at initial diagnosis. In order to make an initial diagnosis, the majority of

participants used the information in the vignette or relied on their prior understanding

of the diagnoses to inform their decision-making. However, other participants relied

on a feeling or instinct, or even based their decision on features that were not evident

in the vignette. These participants all assigned a diagnosis of pedophilia.

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What influenced participants to change their diagnosis?

Table 5: Influences on decision making for participants who changed their diagnosis post education.

Move to Pedophilia N

Move to OCD N

Move to Don’t Know

N

Total N

1. Education Information

“The description gave no indication of this being an intrusive thought” – participant who moved from OCD to P

“I think it’s hard to know from the information given it could be OCD or pedophilic disorder” – Participant who moved from P to DK

“The description of OCD seemed to be typical of his behaviours” – Participant who moved from P to OCD diagnosis.

2 14 11 27

2. Not enough information

“I don’t know enough to be sure of a diagnosis” – participant who moved from P diagnosis to DK.

“I don’t have enough information (how he feels about his thoughts” to determine which (if either) diagnosis he has.” – Participant who moved from P to DK.

0 1 6 7

3. Specific information in the vignette

3.1 Information about sexual arousal

“It doesn’t say he is sexually aroused by the thoughts of touching his niece” – Participant who moved P to DK.

“There was no indication that Steve was aroused by his thoughts” – Participant who moved from P to OCD diagnosis.

0

0

11

2

6

6

17

8

3.2 Mention of thoughts but no actions

“The thoughts rather than actions”- Participant who moved from P to OCD.

0 9 0 9

4. No Response or not relevant 69

p=pedophile, DK = Don’t know.

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All participants who provided a response made some reference to the information

provided as influencing a change in their decision around diagnosis. The majority of

participants made reference more generally to the information about pedophilia or

OCD. Some participants made reference to specific elements of the information

which made then query their decision about the original information presented in the

vignette. Two participants stated that the information about pedophilic disorder was

new to them, and prompted a change in diagnosis towards pedophilia. However, the

majority of participants moved towards a diagnosis of OCD or towards a response of

‘don’t know’, citing the education information as the cause of this change. More

specifically, a number of participants referenced the information regarding sexual

arousal, potential distress around the target’s thoughts and the fact that the target had

not acted on his thoughts, which made them query the target’s presentation and

prompted a shift towards an OCD diagnosis or a response of ‘don’t know’. Some

also stated that this helped them assign a post-education diagnosis of OCD after

assigning an initial diagnosis of pedophilia. This would indicate that these

participants learnt something new from the education information which then led

them to question the information in the vignette. It appears as though the education

information was an important factor in participants’ decision making. What is

interesting about these findings is that the same rationale is used for a move from

pedophilia towards both OCD and Don’t Know, yet why participants chose one over

the other is unclear. Three participants moved from ‘other’ to ‘OCD’ following the

education and also stated that the information provided was the reason for this.

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What influenced participants to keep the same diagnosis post education?

Table 6: Influences on decision making for participants who did not change their diagnosis.

Pedophile Both N

OCD Both N

Other Both N

Total N

1. Already made up my mind

“Honestly don’t know, I had already made my mind up that he was a pedophile as what I’ve always seen in the news/media is if someone touched or has sexual thought about children they are a pedophile” “I chose to believe the best in Steve” – Participant who remained with a diagnosis of OCD

4 4 0 8

2. Nature of the thoughts fit with description 21 7 0 28

2.1 Duration of thought“It mentioned it has been going on for some time”

6 0 0 6

2.2 Age difference“Their age difference still”

2 0 0 2

2.3 Thought content “Inappropriate thoughts of a young girl” “It’s what I’ve been led to believe that if someone has sexual thoughts about a child they are a pedophile”

2.4. Situations the thoughts occurred“It was when Steve was in contact with his niece, presumably not at other times. This leads me to think they are unwanted…”

2.5 Thoughts but not actions“No actions, only intrusive thoughts and no mention of enjoying these thoughts”

13

0

0

0

1

1

0

0

0

13

1

1

3. I didn’t learn anything new

“The descriptions of the conditions were already known to me so I used the same information to base my answer” – Participant who remained with a diagnosis of OCD

0 5 0 5

95

Pedophile Both N

OCD Both N

Other Both N

Total N

4. Not enough information to change my mind

“Because the information I had about Steve stayed the same. I initially thought it was pedophilia and after reading the information on OCD and pedophilia the same scenario about Steve was given, mainly that he had inappropriate thoughts about touching his six year old niece. Without information about how Steve felt about his urges I didn't think there was a reason for my answer to change” – Participant who remained with a diagnosis of Pedophile pre and post education.

“He has persistent thoughts, not irregular. There isn't sufficient information to say otherwise, I would be cautious and defensive as a natural reaction. Shame if he has OCD but I'd rather not risk my kids on it.”

5. Prevalence of disorders

“OCD is more common than pedophilic disorder”- Participant who remained with a diagnosis of OCD pre and post education.

9

0

0

1

0

0

9

1

6. No response or not relevant 75

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Some participants reported that the reason for their second diagnosis remaining the

same as their initial diagnosis was because they had already made up their mind.

However, this was the case for participants who assigned diagnoses of both

pedophilia and OCD. Interestingly, one the response provided references the effects

of the media. Of the participants who stated that they did not learn anything new

from the education, mostly these were participants who had prior knowledge or work

experience in mental health and remained with a diagnosis of OCD. For participants

who remained with a diagnosis of pedophilia, six participants stated that following

the information, the description of Steve fitted with the description of Pedophilia

which is why they remained with their original diagnosis. It appears that once an

initial diagnosis of ‘pedophile’ had been given by a participant, the burden of proof

seemed to be on the information to disconfirm the target as a pedophile rather than

the participants acknowledging that further information might be needed to support a

pedophilia diagnosis. Elements of risk seem to come into this also, with two

participants stating that it is safer to assume the target is a pedophile, as this is a risk

they can understand and manage even though the evidence for this may not be

sufficient. Whilst acknowledging that the information is not sufficient, many

participants stuck with a diagnosis of ‘pedophile’ rather than moving to ‘don’t

know’. A number of participants resisted the education in order to maintain a

position of believing that the presence of a sexual thought about a child does indeed

mean you are a pedophile. Participants who remained with a diagnosis of OCD stated

that they did so as the information confirmed what they originally thoughts or

specifically noted that the vignette mentioned thoughts but not actions. One

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participant stated that the prevalence of OCD is higher than pedophilia and so based

their decision on this.

What further information would participants who responded ‘don’t know’ have liked in order to make a decision?

Table 7: Further information needed by participants who responded ‘don’t know’ post education in order to assign a more specific diagnosis.

N

1.Not enough information in the vignette to make a decision

“I wasn’t given enough information in the statement to make a decision”

5

1.1 Unsure about sexual arousal

“I feel less sure about whether or not he was a pedophile because I don't know if he was sexually attracted to the child…”

9

1.2 More information about Steve’s potential OCD symptoms

“ If it had said he needed to check he was aroused or that the thoughts were intrusive I would have thought he had OCD however it didn’t so it is truly hard to know”

7

1.3 Unsure about his distress

“I think if I was able to hear how these thoughts made him feel, I might have been able to choose one over the other”

14

1.4 Has Steve ever acted on these thoughts?

“… if he had ever acted on these thoughts before or wanted to”

4

1.5 More information about Steve’s history

“any history of anxiety or even abuse”

3

1.6 Does Steve just have thoughts about his niece or anyone else?

“whether Steve’s thoughts were generalized to other children and age groups or if it was isolated to one case”

No Response

2

7

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Participants who responded ‘don’t know’ post education stated that in order to have

made a decision regarding diagnosis, it would have been helpful for the vignette to

contain further information. All participants endorsed this, some commenting

generally on the lack of information in the vignette, and some alluding to more

specific details they would require after having read the education information which

are included as sub-categories. For example, to know for certain about the target’s

distress around his thoughts, whether he experienced sexual arousal and more

information about other possible OCD symptoms such as compulsions. These

participants picked up from the education that these factors were important in

differentiating between the two diagnoses and that, without this information, it was

unclear which label was the better fit.

3.3 Hypothesis 2: A brief education intervention about OCD and pedophilia will

reduce stigma (as measured by desired social distance from the target in the vignette

and their perceived unpredictability and dangerousness) associated with sexual

intrusive thoughts about children.

The first section of Table 4 displays the means, medians and standard

deviations for the Perceived Dangerousness and Perceived Unpredictability items

and the Social Distance Scale total score pre and post education for the whole

sample. Prior to the education, participants believed that there would be around 50%

likelihood that the target would act in a dangerous or unpredictable way towards

others. Scores for social distance were relatively high, indicating that participants

responded as unwilling to have the target fulfil a number of social roles.

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In order to test Hypothesis 2, Wilcoxon matched pairs tests were conducted to

determine whether the change in pre-post education stigma scores was significant.

Ratings of perceived dangerousness and desired social distance reduced significantly

following the education with small effects sizes. There was no evidence of change in

Perceived Unpredictability following the intervention. Therefore, Hypothesis 2 was

partially supported; participants rated the target as less dangerous, and stated that

they would desire less social distance from the target following the education. Table

4 also demonstrates that the results of non-parametric Wilcoxon tests and the

parametric t-tests were comparable.

3.4 Hypothesis 3: Participants who revised an initial diagnosis away from pedophilia

following the information intervention will show a greater decrease in stigma

towards the target than other participants.

Table 4 also displays the means, medians and standard deviations for all three

stigma measures, split by whether or not the individual moved away from a

pedophile diagnosis. For participants who initially diagnosed Steve as a ‘pedophile’

but, following the education intervention, chose a different diagnosis, Wilcoxon tests

indicated a significant decrease in perceived dangerousness and desired social

distance with small to medium effect sizes. Interestingly, the effect sizes were

stronger in this subgroup when compared with the whole sample. Furthermore, for

this group of people the Wilcoxon’s test demonstrated a significant decrease in

perceived unpredictability, however this finding was not consistent when comparing

the Wilcoxon and t-test results.

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Table 8: Change between pre education an post education stigma scores for the whole sample, and also split by whether or not participants moved away from a pedophile diagnosis.

Pre-EducationM SD Mdn

Post-EducationM SD Mdn

DifferenceM SD Mdn

Wilcoxon’s testZ p

t-testt(df) p

Effect size (d)

Whole Sample(N=120)

Perceived Dangerousness (0-100)

52.5

27.9 50 46.5

27.5 50 6.5 19 0 -4.11 <.001 3.783(119) <.001 0.23

Perceived Unpredictability (0-100)

47.2

29.2 50 47.8

28.2 50 0.1 25.9

0 -.880 .379 0.49(119) .961 0.003

Social Distance Scale (7-28) 23.1

4.6 24 21.5

5.3 22 1.4 2.8 0 4.94 <.001 5.528(119) <.001 0.3

Moved from pedophile (N=56)

Perceived Dangerousness (0-100)

50.9

28.5 50 38.0

22.5 40.5 12.9 19.3

5 4.67 <.001 5.021(55) <.001 0.45

Perceived Unpredictability (0-100)

46.9

30.1 50 41.6

25.9 50 5.3 25.5

0 -2.2 .028 1.562(55) .124 0.17

Social Distance Scale (7-28) 23.1

4.7 24 20.6

5.4 21 2.5 3 1 -4.71 <.001 5.978(52) <.001 0.53

Did not move from pedophile (N=64)

Perceived Dangerousness (0-100)

54.9

28 50 53.9

29.3 50 1 17.1

0 -.847 .397 0.469(63) .641 0.03

Perceived Unpredictability (0-100)

48.8

29.3 50 53.2

29.1 50 -4.4 25.5

0 -.957 .339 -1.391(63) .169 -0.15

Social Distance Scale (7-28) 22.9

4.7 24 22.3

5.1 22.5 0.52 2.2 0 -1.72 .085 1.886(60) .064 0.11

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For the group of people who either did not assign a diagnosis of pedophile pre-

education, or who remained with a diagnosis of pedophile at both time points, there

was no significant change in scores for any of the stigma measures. The parametric

and non-parametric tests revealed similar results here.

Despite there being some non-normality in the distribution of pre-post

difference scores in the stigma variables, the parametric and non-parametric tests

reported in Table 4 revealed broadly similar results. As a result, it was considered

that the results of parametric analyses would be reasonably robust. In addition, given

the conceptual value of estimating an interaction term between time (pre vs. post

education) and group (whether or not the participant moved from a diagnosis of

pedophile to another diagnosis or ‘don’t know’), a repeated measures ANOVA was

conducted for each of the dependent variables (perceived dangerousness, perceived

unpredictability and social distance).

Table 10 demonstrates that for the group of people who moved away from a

pedophilia diagnosis post-education, the mean scores for perceived dangerousness,

perceived unpredictability and social distance decrease whereas for the group of

people who did not move away from a pedophilia diagnosis these means do not

decrease, and for perceived unpredictability there is a slight increase. The repeated

measures ANOVA suggested a significant interaction effect between time (pre and

post education) and whether or not an individual moved from a pedophile diagnosis

to an ‘other’ diagnosis. This interaction effect was found for perceived

dangerousness (F=12.415(1,112), p<.01; effect size = 0.1) and for desired social

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distance (F=15.962(1,112), p<.001; effect size = 0.13) indicating that those

individuals who moved away from a pedophile diagnosis following the education

intervention had a significantly greater decrease in stigma scores for these measures

(See Appendix G for interaction graphs). There was also some evidence of an

interaction effect for perceived unpredictability as this result approached significance

(F=3.384(1,112), p=.068; effect size = .03).

4.0 Discussion

Previous research has identified that individuals experiencing forbidden intrusive

thoughts in OCD delay seeking help for significant periods of time due to a fear of

stigma, with individuals who experience sexual intrusive thoughts being particularly

reluctant to seek help for these reasons (Simonds & Thorpe, 2003; Cathey &

Wetterneck, 2013). It is easy to understand why individuals who experience sexual

intrusive thoughts about children might be reluctant to disclose their thoughts, given

that the fundamental fear for people who experience these thoughts are that others

will think they are a pedophile, as well as the potential legal issues this raises. The

current study had two aims, firstly to ascertain whether members of the general

public would make the assumption that the target was a pedophile based on the mere

presence of a sexual thought about a child. Secondly, it aimed to test the

effectiveness of a psycho-education intervention in a sample of the general

population. The results of this study suggest that the majority individuals (75%) did

indeed make the assumption that the target was a pedophile based on the presence of

such thoughts. However, and reassuringly, most individuals moved away from an

initial diagnosis of pedophilia following the education intervention to a diagnosis of

OCD or to a position of uncertainty which was indicated through their response of

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‘don’t know’. This provides some evidence for the effectiveness of a

psychoeducation intervention about OCD in reducing stigma associated with these

thoughts.

The results of this study found that when asked to assign an initial diagnosis

based on minimal information, the majority of participants assigned a diagnosis of

Pedophilia. The qualitative data suggested that prior knowledge was an important

factor in assigning an initial diagnosis of OCD with eight of the 20 participants

assigning an initial diagnosis of this stating they did so due to prior education around

psychology/mental health or their current work. Those who assigned an initial

diagnosis of pedophilia commonly did so because they associated the nature of the

target’s thoughts (eg, sexual thoughts about a child) with pedophilia. There were

some variations in the aspects of the vignette that participants used to make an initial

decision. For example, most participants drew on the nature of the thoughts as

previously mentioned, but some chose to draw on the lack of information and

reflected on the difference between thought and action in order to choose an OCD

diagnosis. Despite the qualitative analysis suggesting that, for the majority of

participants, the information in the vignette influenced their initial decision, for some

people the decision was made based on a ‘gut feeling’.

In regard to those participants who changed their diagnosis, many reported that

they did so because of some aspect of the information provided. Many referred to

this generally, but others drew on differences between the OCD and pedophilia

information. For example, differences in sexual arousal, distress, or OCD

compulsions, and looked for evidence of this in the vignette in order to make a

second decision. Of those who did not change their diagnosis, particularly for those

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who remained with a pedophilia diagnosis pre and post education, the onus seemed

to be on the information to provide disconfirmatory evidence; without this, they were

not willing to consider an alternative option. Some stated that this was because of the

anticipated risk of the target being a pedophile. Additionally, some participants who

remained with a diagnosis of pedophilia stated that they did not change their view

because the education did not provide enough information. However, it is notable

that this reason was given in the context of remaining with a pedophilia diagnosis

rather than changing to the ‘don’t know’ position despite their initial diagnosis being

based merely on a thought.

Hypothesis 1 stated that the proportion of participants who diagnose the target

as being a pedophile will decrease after the brief information intervention. The

results of the McNemars test supports this hypothesis. The potential for stigma

reduction was further tested with Hypothesis 2 - that the brief information

intervention about OCD and pedophilia would reduce stigma associated with sexual

intrusive thoughts about children. This hypothesis was partially supported. Stigma

scores significantly reduced post-education for perceived dangerousness and social

distance, indicating that participants rated the target as being less likely to behave

dangerously towards others, and desiring less social distance from the target. No

significant result was found for perceived unpredictability. A possible explanation

for this result is due to the uncertainty around diagnosis; 26.8% moved towards a

response of ‘don’t know’ following the education, whereas only 3.4% of the sample

in Warman et al.’s (2015) study of diagnosis of violent intrusive thoughts responded

‘don’t know’ following the education. Qualitative responses suggest that participants

may have doubted a pedophilia diagnosis, but were unable to find any

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disconfirmatory evidence regarding unpredictability in the information. They may

have been inclined to judge the target as less dangerous as there was no clear

evidence of action, but may not have changed their views about his unpredictability

as they were unable to judge the risks that may be associated with either diagnosis.

Warman et al (2015) found significant effects for all three stigma measures, and the

current study found similar results, thereby replicating their findings but for sexual

intrusive thoughts about children, and strengthening the evidence that psycho-

education interventions can be an effective way of reducing stigma by providing an

alternative explanation. The hypothesis that there would be an interaction effect

between time (pre and post education) and group (changed vs did not change

diagnosis from pedophilia) was supported with the strongest evidence for perceived

dangerousness and social distance. This provides evidence for a decrease in

stigmatization as only participants who moved away from a pedophilia diagnosis

showed a decrease in the self-report stigma measures. Those who did not change

diagnosis from pedophilia or did not assign an initial diagnosis of pedophilia, did not

show a significant decrease on these measures. This is further supported by

qualitative data, in that the responses from some participants suggest that they were

resistant to the education choosing to rely instead on beliefs. For participants who

assigned a diagnosis of pedophilia pre and post education, part of this was due to the

anticipated risk towards children.

4.1 Practical implications

There is little evidence around sexual intrusive thoughts in OCD, and no

literature to date around pedophile-OCD. Data is lacking regarding how many

individuals present to services with these experiences, and evidence on treatment

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efficacy is lacking for this client group. Practice based evidence, and information on

online OCD support forums would suggest that individuals experiencing this

presentation of OCD are reluctant to seek help due to a fear of how others, including

clinicians, will respond. In particular, they are fearful that others will assume they are

a pedophile, and that they may face legal sanctions accordingly. This study provides

evidence to support these fears; the majority of participants in this sample initially

assumed that the experience of these thoughts is indicative of pedophilia. However,

and very importantly, these assumptions are amenable to change. This study provides

evidence that a brief psycho-education intervention can be successful in reducing

stigmatizing attitudes towards individuals with these thoughts. Despite this, a number

of participants commented on the information being insufficient in order to make a

diagnosis, and yet maintained a diagnosis of pedophilia post-education, whereas

others were comfortable moving to a position of uncertainty and responded ‘don’t

know’. It is important to consider the former group of people more closely, and to

think about why their response did not change. One possible explanation is around

participants’ tolerance of uncertainty. It may have been easier for participants to label

the target as a pedophile because they could quite clearly categorise this person as

‘bad’ and understand the risks associated with them being a pedophile. OCD is a

poorly understood diagnosis generally given the wide variety of manifestations, and

so participants may have struggled to weigh up the risks associated with the thought

in this context. When uncertainty was introduced by the education, some participants

may have decided that it was ‘better to be safe’ than to hold a position of not

knowing because of these potential risks. One participant summed this up in a

qualitative response: “There isn’t sufficient information to say otherwise, I would be

cautious and defensive as a natural reaction. Shame if he has OCD but I’d rather not

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risk my kids on it’.

Recent mental health anti-stigma campaigns have focussed on the high

prevalence rates of mental ill health. In the UK, we are told that 1 in 4 people will

experience a mental health problem in any given year (Time to Change, 2017). As a

result, the general public are likely to be aware that mental illness is relatively

common, and that either themselves or someone they know is likely to experience a

mental health difficulty. One possible explanation for why some participants

maintained a diagnosis of pedophilia in spite of a lack of evidence is that by

accepting that these thoughts could be part of a common mental health condition,

they would be accepting that they could personally experience these thoughts one

day. It is therefore essential for participants to employ the use of ‘othering’ in order

to separate themselves from these potentially common experiences.

The current study highlights some of the challenges that individuals who experience

pedophile-OCD may face. Firstly, it is likely that these individuals feel unable to

seek help from formal networks due to the fears of being misunderstood or

misdiagnosed by professionals. They also may struggle to disclose their experiences

to informal networks for the same reasons. According to Modified Labelling Theory

(Link, Cullen, Struening, Shrout & Dohrenwend, 1989) the individual may attempt to

conceal their distress, which then in turn can lead to social withdrawal, and further

isolation. The implications of non-disclosure can be hugely negative; the individual

continues to receive little or no support, may be isolating themselves from family and

friends whilst experiencing significant anxiety and distress around their thoughts. It

would not be unreasonable to assume that this could then lead to depression, chronic

shame, self-harm, or even suicide attempts – all of which have been noted in online

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forum posts regarding pedophile-OCD presentations.

For clinicians, it is important that teaching and training around OCD should include

teaching around forbidden thoughts, particularly around sexual intrusive thoughts

about children. It is important for clinicians working in mental health services,

particularly those who may work with OCD presentations, to have an understanding

of the different manifestations of OCD and an awareness of the challenges involved

in help-seeking for this client group. While the difference between this manifestation

of OCD and pedophilia presentations may be unclear, it is important for clinicians to

attempt to differentiate between them and not jump to conclusions when faced with

an individual who presents with these difficulties. It is also important that when

clinicians meet individuals who experience these thoughts, they are able to provide

reassurance that they are aware of the biases that exist towards this group of people

and are able to hold in mind how difficult it may have been for the individual to seek

help.

Whilst this study found that education containing minimal information was sufficient

to decrease participant-assigned diagnosis of pedophilia, and reduce stigma, there

were a number of people who resisted. In terms of future anti-stigma initiatives, data

from the qualitative analysis suggests that any information that aims to educate about

this manifestation of OCD needs to be clear about how it is different from

pedophilia. For example, participants in the current study stated that they would have

liked clarification about whether or not the target was sexually aroused by children,

whether these were ‘just thoughts’ or whether he wanted to act on them, or had acted

on them in the past. Participants requested to know more about whether the target

was distressed by these thoughts, and whether the target engaged in any OCD-type

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compulsions. Future education should aim to include this information in order to

reduce any uncertainty that participants may feel. One suggestion for future anti-

stigma initiatives could be to ascertain and include rates of offending in pedophilia vs

OCD. However, this is likely to lead to complications as the DSM-IV definition of

pedophilic disorder implies that an individual is only required to have a sexual

attraction to a child, and does not need to have acted on their thoughts. Therefore, it

is likely that there are a number of people who have a sexual attraction to children

and yet do not act on their thoughts. As such, even this information may not provide

the certainty that participants desire.

4.2 Methodological limitations

This study aimed to make a number of improvements on Warman et al’s (2015)

study. Firstly, in using a sample that was not comprised solely of psychology

undergraduate students. Despite not actively recruiting psychology students or those

from a mental health background, 15.8% of the sample had a background in

psychology or mental health although these were in a minority. This study was

advertised online through social media websites and a psychology research

recruitment website, therefore utilising an opportunity sample. Whilst it is possible to

know how many individuals clicked on the study link, there is no information on

how many individuals saw the study but chose not to access it, and in turn no

information about why some people chose not to participate the study. It is possible

that the idea of considering sexual thoughts about children in any capacity was too

off-putting for some people. The sample was comprised of volunteers who perhaps

felt more able to consider this topic. Because of this, they cannot represent all

potential people who would have been eligible but who chose not to participate, and

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therefore cannot claim to represent the general population. Consideration was given

towards analyzing the data excluding those participants who stated they had a mental

health or psychology background. However, previous research suggests that even

mental health professionals hold stigmatizing attitudes towards this presentation

(Steinberg & Wetterneck, 2016) and are prone to misdiagnosis (Glazier at al, 2013)

and therefore it was not deemed necessary. Consideration was also given to the

impact of demand characteristics on decision making, which would have been

inherent in the pre-post study design. It is possible that by repeating measure and

diagnostic labelling at both time points, participants could have assumed that they

should change their responses in order to fit with the study aims. This could have

contributed to the decision making of participants who changed their diagnosis.

However, the results demonstrating that a substantial proportion of participants

remained with a pedophilia diagnosis pre-and post education would suggest that

perhaps participants did not feel pressured to change their diagnosis and therefore the

impact of demand characteristics is minimal. Furthermore, it is possible that there

may be other factors that influenced participants’ decision making such as personal

experience of OCD or other mental health problems which were not measured in this

study

In regard to the cognitive responses, it may have been useful to have also

gathered information regarding participants’ decisions around completing the stigma

measures. While information was gathered regarding their choice of diagnosis, in

reality the general public do not need to assign diagnosis, nor is it helpful for them to

consider individuals as a label. Although the current study used the word ‘diagnosis’,

ultimately it was assessing how participants’ categorise others. Having qualitative

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information about what may have helped to reduce social distance or perceived

dangerousness and unpredictability, as well as information about diagnosis decisions,

may have been useful in allowing us to determine what information is effective in

reducing stigma within psycho-education materials. Warman and colleagues (2015)

offered an open text response for participant-assigned diagnosis, whereas this study

offered multiple choice options: pedophile, OCD, or other, and the addition of ‘don’t

know’ post-education. Arguably, by not providing a ‘don’t know’ response option

pre-intervention, participants were forced into making a diagnosis when they might

not have done otherwise. It is therefore possible that the number of people who opted

for a pedophile diagnosis is an overestimate, as many may have chosen ‘don’t know’

if it were an option. However, the study was deliberately designed in this way in

order to reflect the fundamental struggle that individuals experiencing pedophile-

OCD have, which is whether someone will think they are a pedophile based on the

presence of a thought alone, or whether in fact OCD would be a credible explanation

for such a thought, with the ‘don’t know’ option introduced post-intervention to

ascertain whether the intervention introduced doubt. It may have been an option to

have included a ‘don’t know’ response pre-intervention, however the likelihood

would have been that the majority, if not all of the sample would have chosen ‘don’t

know’ as the vignette was deliberately ambiguous. The inclusion of an ‘other’ option

was also included pre-intervention, where participants could have expressed their

uncertainty, as several participants chose to do.

4.3 Implications for future research

This study aimed to build on the education intervention used in Warman et al

(2015), by adapting the psychoeducation materials in order to be less symptom-

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focussed and more person-centred in the hope of increasing empathy and reducing

stigma towards the target individual. However, it would be important for future

research to compare a number of ways of delivering education in order to ascertain

the most effective way of presenting information in order to reduce stigma, as per the

recommendation of Warman et al (2015). There is no current research on Pedophile-

OCD as a presentation specifically. It is important for future research to ascertain a

prevalence rate in order to better understand this presentation, and to ascertain the

barriers to seeking help. However, it is also important to note that this is likely to be

difficult due to the reluctance to report thoughts of this nature. Given the wealth of

information available on online OCD support forums regarding this manifestation of

OCD, one suggestion would be to conduct a qualitative analysis of forum posts in

order to better understand this presentation. Previous research has highlighted that

clinicians can hold stigmatising attitudes towards individuals with OCD (Steinberg &

Wetterneck, 2016) but this research is limited. It would be important for future

research to examine attitudes of clinicians further. The results of the current study

revealed a group of people who maintained a diagnosis of pedophilia, and resisted

the education. It would be important to examine this group of people further, and

attempt to ascertain what information in needed in order to change attitudes. It would

be interesting to compare, for example, whether this group of people will maintain

their beliefs for a range of OCD manifestations, or whether they are confined to

sexual intrusive thoughts about children.

4.4 Conclusion

Individuals who experience sexual intrusive thoughts about children (or

pedophile-OCD) are likely to be an isolated group who feel unable to seek help due

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to fears of being labelled a pedophile, and also fearing the stigma that is associated

with this label. This study demonstrated that the presence of a thought about sexual

activity with a child alone was enough to be associated with pedophilia and

stigmatizing attitudes for the majority of the sample. However, one way of reducing

stigmatizing attitudes towards this presentation is by teaching people about OCD

which is one of the presentations in which this experience can occur, and allowing

people to see the difference between this presentation and pedophilia. Following a

brief education intervention, OCD became a more credible diagnosis for these

experiences with many participants changing their ‘best guess’ diagnosis. A large

number of other participants moved to a position of uncertainty and were able to

identify additional information they may need in order to feel sure that the target was

not a pedophile. This included information about distress relating to the thoughts,

sexual arousal and whether the target had ever acted on such thoughts. It is

important that teaching and training delivered to mental health professionals include

less typical manifestations of OCD such as pedophile-OCD in order to improve

clinician’s understanding, reduce any stigmatizing attitudes that are held, to prevent

misdiagnosis, and to understand the fears and concerns of people who present with

this type of thinking.

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List of Appendices

Appendix A: Recruitment Advert

Appendix B: Vignette

Appendix C: Measures

Appendix D: Education Intervention

Appendix E: Cognitive Response Questions

Appendix F: Information Sheet

Appendix G: Consent Form|

Appendix H: Debrief

Appendix I: Ethical Approval Letter

Appendix J: Normality Graphs

Appendix K: ANOVA Interaction Graphs.

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Appendix A: Recruitment Advert

*Please note, the advert which was posted on http://www.onlinepsychresearch.co.uk made no reference to the prize draw, as per their instructions.

Win one of 3 x £50 Amazon Vouchers

My name is Terri Porter, a Trainee Clinical Psychologist studying at the University of Surrey.

I am currently researching into the general population’s attitudes towards individuals who have sexual thoughts about children.

My research requires participants to take part in an online survey which I invite you to complete.

Your responses to the survey will be a valuable contribution to ongoing research in psychology.

The survey should take around 20 minutes and the link is included below.

https://surreyfahs.eu.qualtrics.com/jfe/form/SV_3xyUR7WFJfjkK5n

For more information, please e-mail me on:

t.porter@surrey.ac.uk 

This study has received a favourable ethical opinion from the School of Psychology Ethics Committee, FHMS, University of Surrey

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Appendix B: Vignette

Please read the following short vignette about an individual who is experiencing

sexual thoughts about a child. Please read carefully and you will be asked for your

thoughts on this later.

Steve is a 25 year old male. Often, when he is with his six-year old niece he has thoughts about touching her inappropriately. This has been going on for some time.

We know that you may not have had any mental health education or training but, if

you had to make your best guess, what diagnosis do you think this person should be

given. Even if you are not sure, please tell us what your best guess would be:

a) Steve has Pedophilic Disorder (commonly called a ‘pedophile’)

b) Steve has obsessive-compulsive disorder (OCD)

c) Other (please specify) _____________

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Appendix C: Measures

Perceived Dangerousness

“How likely to you think it is that this person would be dangerous towards others?”

0 100Not at all Highlylikely Likely

Continuous scale 0-100 (0= not at all likely, 100= highly likely)

Perceived Unpredictability

“How likely do you think it is that this person would behave in an unpredictable way towards others?”

0 100Not at all Highlylikely Likely

Continuous scale 0-100 (0= not at all likely, 100= highly likely)

Social Distance Scale (Link et al, 1987)

1) How would you feel about renting a room in your house to someone like Steve?

1 2 3 4

Definitely Probably Probably Definitelywilling Willing Unwilling Unwilling 2) How would you feel about being a worker on the same job as someone like Steve?

1 2 3 4

Definitely Probably Probably Definitelywilling Willing Unwilling Unwilling

3) How would you feel having someone like Steve as a neighbour?

1 2 3 4

Definitely Probably Probably Definitelywilling Willing Unwilling Unwilling

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4) How would you feel about Steve taking care of your children for a couple of hours?

1 2 3 4

Definitely Probably Probably Definitelywilling Willing Unwilling Unwilling

5) How would you feel about having your children marry someone like Steve?

1 2 3 4

Definitely Probably Probably Definitelywilling Willing Unwilling Unwilling

6) How would you feel about introducing Steve to a young woman you are friendly with?

1 2 3 4

Definitely Probably Probably Definitelywilling Willing Unwilling Unwilling

7) How would you feel about recommending someone like Steve for a job working for a friend of yours?

1 2 3 4

Definitely Probably Probably Definitelywilling Willing Unwilling Unwilling

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Appendix D: Education Information

“You will now be shown some information about two different types of mental health difficulties. Please read carefully”

Obsessive Compulsive Disorder People with OCD experience recurrent and persistent unwanted thoughts that cause significant anxiety and distress. When they experience an unwanted thought, they feel driven to perform an action in order to reduce their anxiety and cancel out the thought. This is often very time consuming and can mean that the person finds it difficult to have relationships, socialise with others and their work might be affected.Some people with OCD have unwanted thoughts about the possibility that they might touch children inappropriately. For a person with OCD, thoughts like these cause a significant amount of anxiety and distress as they are unwanted, and because the person has never had a sexual attraction to children nor do they have any desire to act on this thought. A person with OCD finds these thoughts disgusting. In response to these thoughts, a person might repetitively check themselves for signs of sexual arousal whenever they are around children, or whenever they experience this type of thought. If this person were to work as a teacher for example, they may feel so distressed by these thoughts that they quit their job. If they had young children in the family, they might avoid spending time with their family due to the distress that they feel. In some cases, people can become so distressed that they consider suicide.  Pedophillic Disorder (Otherwise known as a pedophile)People with pedophillic disorder experience recurrent intense thoughts about sexual activity with children aged 13 or younger. People with pedophilic disorder find these thoughts sexually arousing. These thoughts generally last for longer than 6 months and the individual experiencing the thoughts must be at least 16years old, and at least 6 years older than the child they are attracted to. There are a group of people with pedophillic disorder who in response to their thoughts or urges, will access child pornography. They might behave in a sexually inappropriate way with a child, due to their sexual interests in children, which would be considered a criminal offence. They may or may not feel distressed by their behaviour. There are also occasions where an individual can have pedophillic disorder but experience a great deal of anxiety, guilt and alienation from other people which can lead to difficulties pursuing personal goals and significant distress. For example, an individual may find that they experience thoughts relating to sexual activity with children, which they find sexually arousing, but they do not wish to act on these thoughts and feel distressed by them. Despite this individual not engaging in sexually inappropriate behaviour with a child, and they may never behave in this way for their entire life, they continue to feel sexually aroused by their thoughts.

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Appendix E: Cognitive Response Questions

1) Now please think back to the first time you were asked to make your best guess diagnosis for Steve. What information, if any, helped you make your best guess diagnosis?

The next set of questions relate to your second best guess diagnosis (i.e. the diagnosis you were asked to make after you had read the information about OCD and Pedophillic Disorder).

2) If your second diagnosis of Steve was different to your first diagnosis, why do you think it changed?

3) If your second diagnosis of Steve was not different to your first diagnosis, why do you think it stayed the same?

4) If your second diagnosis of Steve was a pedophile (pedophilic disorder), can you tell us how you made this decision?

5) If your second diagnosis of Steve was OCD, can you tell us how you made this decision?

6) If your second diagnosis was ‘other’, can you tell us how you made this decision?

7) If your second diagnosis was ‘don’t know’, what further information, if any, would have helped you to make a decision? 

8) Do you have any general comments about this study?

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Appendix F: Study Information Sheet

Participant Information Sheet July 2016 (version 1)

PROJECT TITLE Attitudes towards people who have sexual thoughts about children.

Introduction

My name is Terri Porter, a Trainee Clinical Psychologist studying at the University of Surrey. I invite you to take part in a research project, the details of which are below. Please take time to read the following information carefully.What is the purpose of the study?

I am interested in the way people make judgements about individuals who have intrusive sexual thoughts about children. There is currently very little research into this topic.

What will my involvement require?

If you choose to take part, you will be taken to a consent page before proceeding to an online survey. You will be asked to read a short description of a person’s thoughts and to answer some questions about the judgements you might make about the person. You will then be asked to read some information after which you will be again asked to read a description of a person’s thoughts and to answer some further questions about the judgements you might make about the person. The study should take approximately 20 minutes to complete (this is an estimate and will be refined after piloting). This study will not ask you about your own thoughts, or ask you for personal information about yourself other than basic demographic information and your email address should you wish to enter the prize draw.

Do I have to take part?

No, your participation is voluntary. If you change your mind during the study you can withdraw without giving a reason by exiting the survey. If you provide your email address for the prize draw, you are welcome to contact the principle researcher (Terri Porter – t.porter@surrey.ac.uk) within 7 days of completing the study to request your data be removed from the dataset.

What are the possible disadvantages or risks of taking part?

This study contains a very short description of an individual who has sexual thoughts about a child. There are no details of sexual acts, and it is not anticipated that this should cause distress. However, if you feel that you might find reading such a description upsetting or you are not sure if you would, please do not continue with the study.

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What are the possible benefits of taking part?

As a thank you for completing the study, you will have the opportunity to enter a prize draw to win one of three £50 Amazon vouchers.

What if there is a problem?

Any complaint or concern about any aspect of the study will be addressed; please contact me, Terri Porter (Principal Researcher) in the first instance or alternatively my supervisor Dr Laura Simonds. Our contact details are below. You can also contact Prof Derek Moore, Head of School of Psychology at d.moore@surrey.ac.uk

Will my taking part in the study be kept confidential?

Yes. You will not be asked to provide any personally identifiable information during the study unless you choose to provide your email address for the prize draw. In this instance, all email addresses will be removed from the dataset and stored separately to the study data. This means that your responses will not be linked to your email address. Data and email addresses will be coded so that when removed, only the principle researcher will have access to them for the purpose of removal of the data should a participant request to withdraw. Data will be stored securely in accordance with the Data Protection Act 1998.

What if I want to know the results of the study?

If you wish to know the results of the study, please email me using the email address below in May 2017 and I can forward these on to you.

Contact details

Terri Porter (Principle Researcher)Trainee Clinical Psychologist

PsychD Doctoral Training Programme

University of Surrey

t.porter@surrey.ac.uk

Ms Linda Morison (Secondary Supervisor)

Senior Lecturer in Psychology

l.morison@surrey.ac.uk

Who has reviewed the project?

The study has been reviewed and received a Favourable Ethical Opinion (FEO) from the Faculty of Health and Medical Sciences Ethics Committee at the University

Thank you for taking the time to read this Information Sheet.

Appendix G: Consent Form

Dr Laura Simonds (Supervisor)

Lecturer in Clinical Psychology

PsychD Doctoral Training Programme

University of Surrey

l.simonds@surrey.ac.uk

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Consent Form [version 1, July 2016)

Judgements about sexual intrusive thoughts regarding children

Please indicate that you understand and consent to each of the below statements by ticking each box.

I have read and understood the Information Sheet provided. I have been given a full explanation by the investigators of the nature, purpose and likely duration of the study, and of what I will be expected to do.

I have been advised about any disadvantages of taking part in the study.

I agree to comply with the requirements of the study as outlined to me to the best of my abilities.

I agree for my anonymised data to be used for this study.

I understand that all project data will be held for at least 6 years and all research data for at least 10 years in accordance with University policy and that my personal data is held and processed in the strictest confidence, and in accordance with the UK Data Protection Act (1998).

I understand that I can withdraw my participation from the study at any time during the completion of the survey.

I understand that if I provide my email address for the prize draw, I can contact the principle researcher to withdraw from the study and request that my data be removed. I understand that if I do not provide my email address for the purpose of the prize draw, the researcher will be unable to identify my responses and therefore I cannot withdraw from the study once I have submitted my responses.

If I withdraw from the study, I consent to the researchers using data I had submitted prior to withdrawing. [Participant has the option of selecting no and is still able to complete the study]

I understand that the group data may be published in an academic journal, but that all data supplied will be anonymised

I agree for my data to be used in future research that will have received all relevant legal, professional and ethical approvals.

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I confirm that I have read and understood the above and freely consent to participating in this study. I have been given adequate time to consider my participation.

Appendix H: Debrief

Thank you for taking the time to complete this survey. Your responses are very valuable. In this study, I am trying to understand how the general public feel about individuals who have sexual intrusive thoughts about children. Intrusive thoughts are unwanted thoughts, images or urges which occur involuntarily (without bringing

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them to mind yourself) and are usually about things that we don’t want to happen. These thoughts are extremely common in the general population and many people experience them without distress. However, there are a group of people who experience these thoughts frequently and suffer a great deal of distress, for example, when these thoughts are a symptom of Obsessive Compulsive Disorder (OCD).

Some people with OCD experience intrusive thoughts about causing harm to others, and this can include thoughts about behaving in a sexually inappropriate way, including towards children. These people experience significant distress when they have these thoughts, they do not feel sexually attracted to children, and they never act on their thoughts (for example, they would not to commit an offence against children). People with this type of OCD are unlikely to seek help because they fear that other people will think they are a pedophile. Probably because of this, people with this type of OCD have high rates of self-harm and suicide attempts. This study aimed to find out whether the fears of people with this type of OCD are justified (would other people think they are a pedophile based on a mere thought). The study also investigated whether providing people with brief information about both OCD and Pedophillic Disorder would change people’s attitudes about a person who experiences thoughts about children. We hope that this study will help us learn more about what needs to be done to reduce stigma for individuals who experience OCD, in order to improve the rates of help-seeking.

Please be assured that we are not making any judgement on your views and attitudes about people who have these types of thoughts. Being able to judge what type of problem a person is experiencing is difficult, even for professionals who are trained to work with OCD and Padophillic Disorder.

If you feel that you would like to know more about intrusive thoughts or OCD, or if you have concerns that you might be experiencing distressing intrusive thoughts yourself, please find information below which details sources of support and information.

- NHS Choices is a website run by the NHS and provides information about mental and physical healthWebsite: http://www.nhs.uk

- OCD Action is the UK’s largest OCD Charity. It provides information and support for people who may be affected by obsessive-compulsive disorder.Website: http://www.ocdaction.org.uk Tel: 0845 390 6232

- Your GP can provide advice and information and is the first port of call should you become concerned about your mental health.

Thank you for taking part in the survey, your responses are invaluable to the study and will contribute to the ever growing research in psychology.

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Terri PorterTrainee Clinical PsychologistUniversity of Surrey

Appendix I: Ethical Approval Letter

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Appendix J: Normality Graphs

Perceived Dangerousness (Difference pre-post scores)

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Perceived Unpredictability (Difference Pre-Post Scores)

Social Distance Scale (Difference pre-post scores)

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Appendix K: ANOVA Interaction Graphs

Group x Time Perceived Dangerousness

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Group x Time Perceived Unpredictability

Group x Time Social Distance

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Part 3: Summary of Clinical Experience

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Year 1

Adult Community Mental Health Service and an Early Intervention for Psychosis Service.

I worked with working age adults (18-65yrs) presenting with a range of moderate to severe mental health difficulties including depression, social anxiety, panic disorder, agoraphobia, persistent delusional disorder and first episode psychosis. My work was predominantly on an individual basis and using Cognitive Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT). I also co-facilitated a group for young people with first episode psychosis using an ACT approach and evaluated the effectiveness of this for the service.

I completed neuropsychological assessments whilst in this service and also delivered two pieces of training – one teaching about ACT and the other was disseminating information from a conference I attended about community psychology to the team.

Year 2

Older People’s Community Mental Health Team, Older People’s Acute Inpatient Ward and a Dementia Ward.

In this placement I was split across a community mental health service for older people, an acute older people’s inpatient ward and a dementia unit. I worked with a range of difficulties including depression, obsessive-compulsive disorder, adjustment difficulties and dementia. I worked with clients predominantly on an individual basis using Cognitive Behavioural Therapy and Narrative Therapy. I also completed family-based interventions. Some work was completed indirectly with family members of clients with advanced dementia, or with care home staff.

I led reflective practice and team formulation sessions, and delivered training on Motivational Interviewing. I also delivered training on the updated trust policy on seclusion and restrictive interventions to ward staff.

Community Child and Adolescent Mental Health Service and Child and Adolescent Learning Disabilities Service.

In this placement I was split across two services, a community child and adolescent mental health team and a child and adolescent learning disabilities team. I worked with children and young people aged 5-18, with and without learning disabilities.

I delivered therapeutic interventions predominantly using CBT adapted for use with young people. I also worked within a systemic framework and used some ideas from Narrative Therapy with a young person who was under a child protection plan. I worked with difficulties such as depression, panic disorder, social anxiety, obsessive-compulsive disorder, attachment difficulties, autism, ADHD, challenging behaviour and sexuality issues.

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I completed a number of neuropsychological assessments to ascertain whether clients met criteria for a learning disability. I worked jointly with families and schools, providing indirect interventions and consultation.

Year 3

Community Adult Learning Disabilities Service

In this placement, I worked with adults aged 18-65 with moderate to severe learning disabilities. I worked with a number of clients on an individual basis who presented with anger management difficulties whereby most of the work was carried out within a CBT framework, but some using Cognitive Analytic Therapy. Most of my work was carried out indirectly with staff in residential care homes, to encourage psychological thinking about client difficulties. My work was also informed by systemic and psychodynamic ideas. I completed several behavioural assessments using functional analysis and put together positive behavior support plans for clients with input from other staff members.

I completed a neuropsychological assessment with a deaf client, to assess for a learning disability, and also carried out dementia screening assessments.

Specialist Placement – Specialist Trauma Service

In this placement, I worked with adults aged 18-65 presenting with Post Traumatic Stress Disorder (PTSD). All of my work was using a Trauma Focused CBT model (TF-CBT).

My clinical work on this placement involved conducting assessments and treatment sessions with people who presented with PTSD. Many of whom had co-morbid depression, and a large number of whom were asylum seekers or refugees and so had immigration and legal issues. I also completed an intensive treatment, whereby the same client was seen for 5 hours per day, for 5 days over the course of two weeks, totaling 25 therapy sessions. Outcomes were monitored regularly for all clients using a range of psychometric measures. I also delivered a 4-session grounding protocol for a number of clients on the waiting list for treatment, which aimed to teach grounding and stabilization skills to clients prior to beginning therapy.

I completed some data analysis alongside an Assistant Psychologist looking at predictors of drop-out and successful treatment completion and presented this to the team. I also analysed service data for commissioners and took on a leadership role in screening and accepting referrals, and inducting visiting members of staff into the service.

Part 4: Table of Assessments Completed During Training.

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Year I Assessments

ASSESSMENT TITLE

WAIS WAIS Interpretation (online assessment)

Practice Report of Clinical Activity

A cognitive-behavioural assessment and formulation of Anne; a female in her mid-forties presenting with persistent delusional disorder

Audio Recording of Clinical Activity with Critical Appraisal

Audio recording of clinical activity with critical appraisal: a CBT intervention with a male in his early forties presenting with panic and agoraphobia.

Report of Clinical Activity N=1

A cognitive behavioural assessment, formulation and intervention of a male in his early 40s presenting with panic disorder and agoraphobia.

Major Research Project Literature Survey

Why do young people use the Internet to communicate their experiences of self-harm, and how to people respond to such content? A survey of the relevant literature.

Major Research Project Proposal

An exploration of the use of online self-harm message boards and social media websites by young people.

Service-Related Project An evaluation of the effectiveness of an Acceptance and Commitment Therapy (ACT) group for service users within a recovery and support team and an early intervention service.

Year II Assessments

ASSESSMENT TITLE

Report of Clinical Activity/Report of Clinical Activity – Formal Assessment

A neuropsychological assessment of a male in his late sixties following a stroke.

PPLD Process Account PPDLG Process Account

Presentation of Clinical Activity

An assessment and intervention for a male in his late teens with emotion regulation difficulties using an

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integrative approach.

Year III Assessments

ASSESSMENT TITLE

Major Research Project Literature Review

What is the evidence for self-stigma and stigmatisation by others in Obsessive-Compulsive Disorder?

Major Research Project Empirical Paper

Impact of a brief education on stigma related to sexual intrusive thoughts about children

Final Reflective Account

On becoming a clinical psychologist: A retrospective, developmental, reflective account of the experience of training

Report of Clinical Activity/Report of Clinical Activity – Formal Assessment

A cognitive analytic therapy informed assessment and intervention of a male in his mid-thirties with a mild learning disability presenting with anger management difficulties.

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