GET THE APP

Stigma and Shame as Barriers to Treatment for Obsessive-Compulsive and Related Disorders
Journal of Depression and Anxiety

Journal of Depression and Anxiety
Open Access

ISSN: 2167-1044

Research Article - (2015) Volume 4, Issue 3

Stigma and Shame as Barriers to Treatment for Obsessive-Compulsive and Related Disorders

Kimberly Glazier1*, Chad Wetterneck1, Sonia Singh2 and Monnica Williams3
1Rogers Memorial Hospital, Oconomowoc, WI, USA, E-mail: [email protected]
2Bowling Green State University, Bowling Green, OH, USA, E-mail: [email protected]
3University of Louisville, Center for Mental Health Disparities, Department of Psychological & Brain Sciences, Louisville, KY, USA, E-mail: [email protected]
*Corresponding Author: Kimberly Glazier, MA, Rogers Memorial Hospital, 34700 Valley Road, Oconomowoc, WI 53066, USA, Tel: 978-270-8925 Email:

Abstract

Limited research has examined barriers to treatment for obsessive-compulsive disorder (OCD), and no known studies have addressed barriers to treatment for trichotillomania (TTM) or skin picking disorder (SPD). Additionally, existing literature does not examine differences in barriers to treatment based on the content and severity of OCD obsessions. Previous literature has shown that shame and stigma may be an important reason for avoiding psychological treatment. This study examined the potential role of stigma and shame surrounding attitudes about treatment initiation for individuals with OCD, TTM, or SPD. Participants were recruited from study links posted on professional mental health websites. Included in the analyses were those who met diagnostic screening criteria for OCD, TTM, or SPD (n=587). Across disorders, the most frequently endorsed barrier was being “ashamed of my problems.” Ethnic minorities endorsed more stigma/shame connected with family disapproval. Individuals with OCD were significantly more likely to report a fear of involuntary hospitalization. Content and severity of OCD obsessions impacted stigma/shame barriers, as those with high levels of unacceptable/taboo thoughts were at greater risk for experiencing stigma/shame. Implications of findings are discussed.

Keywords: Barriers to treatment; Obsessive-compulsive disorder; Trichotillomania; Skin picking disorder; Shame and stigma

Introduction

Although effective treatments for obsessive-compulsive related disorders exist [1-3], nonetheless the average delay from onset of symptoms to initiating treatment is over ten years [4]. Additionally, obsessive-compulsive (OC) spectrum disorders without appropriate treatment tend to be chronic in nature [5,6]. Therefore, it is crucial that people with these spectrum disorders engage in the existing highly efficacious treatment approaches.

Limited research has examined barriers to treatment for obsessivecompulsive disorder (OCD). Extant research suggests financial factors, uncertainty regarding how to find the right treatment option, and belief that patients can overcome the symptoms without professional help are critical in preventing treatment engagement [7,8]. However, shame and stigma concerns are also highly prevalent. For example, 20.5% of those never treated from the National Anxiety Disorders Screening Day survey endorsed a fear of what others would think as a barrier to care [9]. Another study of treatment-seeking among those reporting having OCD in an Internet sample found that over half reported feeling ashamed of their problems [8], and similar concerns were reported by African Americans with an OCD diagnosis [10].

The existing literature, however, does not assess for differences in ability to obtain treatment based on the content and severity of obsessions. Williams, Mugno, Faber, and Franklin [11] noted that OCD is a phenomenologically heterogeneous disorder, and it is reasonable to infer that those with obsessions considered immoral in nature (e.g., sexual, violent, religious obsessions) may be particularly vulnerable to heightened levels of stigma and/or shame [7,12,13], which may pose an additional barrier to treatment. For example, people with obsessions about harming children may be reluctant to share these thoughts with professionals out of fear they would be considered deviant and subsequently shamed and ostracized. Therefore, it is plausible that the content of one’s obsession may have a significant impact on whether or not treatment is sought and/or obtained.

Additionally, no current work has assessed factors associated with barriers to treatment for individuals with trichotillomania (TTM) or excoriation (skin-picking) disorder (SPD). However, people with trichotillomania may have obvious signs of the disorder in the form of bald patches, missing eyelashes, or missing eyebrows. People with skin picking may have red patches, scabs, and scars on the face, hands, or other places that are not easy to conceal. Friends and family members may have ridiculed sufferers for their inability to stop the behavior and the subsequent visible results. Research has found individuals suffering from trichotillomania and skin-picking disorder experience elevated levels of shame [13], but how the shame impacts their decision to seek treatment remains unclear.

Because of the notable gap in the literature, new research is needed to develop a more comprehensive understanding of barriers to treatment. Such information can potentially be utilized to shape targeted interventions, thereby decreasing the impact of the disorder and improving rates of treatment initiation. The aim of the current investigation is to obtain a better understanding of the barriers to treatment for OCD, trichotillomania and skin-picking disorder. Based on previous findings among those with OCD, we hypothesized that shame, stigma and doubt about the efficacy of treatment will be more highly endorsed than logistical and financial factors for all three OC spectrum disorders under investigation. Additionally, we predicted that for OCD, the content of the obsession would affect the outcome; specifically participants who endorse higher levels of sexual, violent, or religious obsessions (unacceptable/taboo thoughts) would experience more stigma and shame-related barriers to treatment than participants with other types of obsessions.

Data Analysis

The Statistical Package for the Social Sciences (SPSS) was used for all analyses. Analyses were two tailed and statistical significance was determined by α=0.05. The a priori analysis consisted of a oneway ANOVA and was conducted to assess for significant differences in the barriers to treatment items across diagnoses. Additional analyses were conducted to assess if the content of OCD obsessions affected the endorsement of barriers to treatment. Due to participants’ high level of comorbidity amongst OCD obsessional types, post hoc analyses were conducted to assess for significant differences in barriers to treatment across the different types of obsessions the severity of the symptoms was factored into the analyses. The symptom severity scores from each obsession dimension were split into high versus low severity with the upper quartile of scores coded as high severity and the lower quartile scores coded as low severity. Pearson Chi-Square analyses were conducted to assess for significant differences in barriers to treatment for each OCD dimension dependent on the severity of symptomatology. Post hoc analyses were also conducted to assess for differences in barriers to treatment depending on race and ethnicity.

Results

A Priori analyses

Barriers to treatment: Across the OC spectrum disorders: Of the 17 items from the BTQ, six-items were reported as a barrier to treatment by the majority (i.e., over 50%) of participants, across all three diagnoses.

Half of these barriers were related to stigma/shame concerns (i.e., “ashamed of my problems”; “ashamed of needing help”; “worried what others may think of me if they knew I was in treatment”). Additionally, logistical (i.e., “unsure who to see/where to go”), financial (i.e., “worried about the cost”) and personal (i.e., “wanted to handle it on my own”) factors were also endorsed by over half of all participants (Table 2).

Characteristic Percentages (%)
Trichotillomania OCD Skin-picking disorder Total Sample
  (n = 268) (n = 164) (n = 155) (N = 587)               
Stigma/Shame Factors
Ashamed of my problems 72.0 75.0 74.8 73.6
Ashamed of needing help 60.8 65.2 70.3 64.6
Worried what others’ may think of me                                                       
if they knew I was in treatment 58.2 65.9 56.8 60.0
Uncomfortable speaking with a health professional 38.1 48.2 44.5 42.6
Fear of being criticized by family 32.5 40.2 32.3 34.6
Scared of being put in a hospital against my will 20.1^ 39.0*^ 21.3* 25.7
Perception/Satisfaction Factors
Wanted to handle it on my own 70.5 73.8 71.6 71.7
Did not think treatment would work 50.7 44.5 45.2 47.5
Received prior treatment that didn’t work 40.7 29.9 26.5 33.9
Unsatisfied with services that were available 24.6 22.0 24.5 23.9
Unable to choose the provider I wanted to see 14.9 18.9 19.4 17.2
Logistical Factors
Unsure who to see/where to go 70.1 66.5 74.8 70.4
Too inconvenient/take too much time 42.9 36.0* 51.0* 43.1
Transportation or scheduling issues 28.0 25.6 21.9 25.7
Could not get an appointment 6.3^ 16.5*^ 5.2* 8.9
Financial Factors
Worried about the cost 59.7 53.7 54.2 56.6
Health insurance would not cover treatment 41.8 39.0 38.1 40.0

Notes:*denotes a significant difference between the OCD and skin-picking groups
^denotes a significant difference between the OCD and trichotillomania groups

Table 2: Barriers to treatment breakdown.

While the majority (82.4%) of items were endorsed by at least one-quarter of the overall sample, significant differences between diagnostic conditions was found on three items. Participants were significantly more likely to endorse “scared of being put in a hospital against my will,” depending on their diagnosis [F(2,584)=10.91, p<0.001]; more specifically, participants with OCD were approximately twice as likely to select the item as a treatment barrier compared to those who screened positive for TTM or SPD, respectively (39.0% vs. 20.1%; 21.3%). Additionally, a significant difference between conditions was found for the question “I could not get an appointment” [F(2, 584)=8.43, p<0.001], with individuals with OCD being at least twice as likely to report not being able to get an appointment compared to those with trichotillomania or skin-picking disorder (16.5% vs. 6.3% and 5.2%, respectively). Lastly, a significant difference between participants with OCD versus SPD was found for the item “I thought it would be too inconvenient or take too much time” [F(2, 584)=3.68, p<0.05]. Participants with SPD were approximately 1.5 times more likely to endorse the item compared to those with OCD.

Post hoc analysis

Barriers to treatment: Across race and ethnicity: To examine differences based on race and ethnicity, participants were divided into two groups, non-Hispanic White (n= 484) compared to all others (n=103). Minorities were placed in a single group because there were not enough to examine differences separately. Combining all conditions, significant differences were found for the following barriers to treatment: “afraid of being criticized by my family if I sought help” (32.0% vs. 46.6%, p=0.005), “troubles with transportation or scheduling,” (23.8% vs. 53.7%, p=0.018), and “could not choose the provider I wanted” (15.7% vs. 32.1%, p=0.036).

Barriers to treatment: OCD content and severity: Significant differences were found between some of the stigma/shame treatment barriers for participants who had high versus low severity of “unacceptable thoughts” obsessions (e.g., violent, sexual, or religious obsessions). No significant differences between OCD content and severity was found for individuals with contamination or symmetry obsessions. Participants with high severity of violent or sexual obsessions were significantly more likely to report fears about being hospitalized against their will compared to participants with low severity of those types of obsessions [Wald chi-square (1)=7.398; p=0.007; Wald chisquare (1)=6.727; p=0.009]. No significant difference between symptom severity and obsessional content was found for the other symptom dimensions for the fear of hospitalization barrier to treatment item. However, participants with high severity of religious obsession were significantly more likely to report concern of being criticized by family than participants with low severity of religious obsessions [Wald chisquare (1)=6.499; p=0.011, respectively] or those with any of the other obsession dimensions. Table 3 describes a complete depiction of the stigma/shame items and treatment barriers that were associated with the content and severity of OCD, only items with significant findings are shown.

Characteristic Endorsed response (%) Chi-square P-value             
  Low severity High severity    
Scared of being put in a hospital against my will
Sexual obsessions 17.2 48.5 6.727 .009
Violent obsessions 25.5 52.4 7.398 .007
Unacceptable thoughts obsessions 25.0 50.0 4.912 .027
Ashamed of my problems                                                                               
Sexual obsessions 58.6 84.8 5.335 .021            
Scrupulous obsessions 62.7 87.2 8.093 .004
Unacceptable thoughts obsessions 55.6 81.6 5.845 .016
Did not think treatment would work 
Sexual obsessions 20.7 63.6 11.581 .001
Unacceptable thoughts obsessions 30.6 65.8 9.187 .002
Ashamed of needing help        
Scrupulous obsessions 54.2 76.6 5.687 .017
Worried what others’ may think of me if they knew I was in treatment
Violent obsessions 56.4 76.2 4.112 .043
Scrupulous obsessions 55.9 83.0 8.783 .003
Uncomfortable speaking with a health professional
Violent obsessions 30.9 64.3 10.704 .001
Unacceptable thoughts obsessions 27.8 50.0 3.831 .050
Fear of being criticized by family        
Scrupulous obsessions 28.8 53.2 6.499 .011
Wanted to handle it on my own      
Scrupulous obsessions 64.4 83.0 4.540 .033

Table 3: Content of obsession, severity of OCD and significant stigma/shame& perception/satisfaction barriers to treatment.

Discussion

Across disorders, the most frequently endorsed barrier was being “ashamed of my problems,” followed closely by “wanting to handle it on my own,” and not knowing “where to go for help.” These concerns are consistent with previous studies of OCD [2,8] however, the current study found a higher degree of shame/stigma related concerns than previous studies. For example “felt ashamed of my problems” was endorsed by three-quarters of those with OCD in the current study compared to just over half of the Internet sample in Marques et al. (75.0% vs. 53.2%). This discrepancy may be due to differences in the symptom dimensions endorsed by both study samples. The type of participants’ obsessions was not included in the Marques et al. sample; our sample, however, did have a heightened amount of participants with elevations in the unacceptable thoughts dimension. If the Marques sample had fewer participants with unacceptable thoughts then it is possible that the lower levels of stigma/shame barriers to treatment may be related to differences in the percentage of the participants suffering from unacceptable thoughts.

When examining ethnic and racial differences in barriers to treatment overall, a few unique concerns emerged for ethnic minorities, most notably stigma and shame connected to family disapproval. Minorities tend to underutilize mental health treatment for OCD, due in part to negative perceptions about Western mental health care, and they also tend to have closer relationships with family members [16]. Thus stigmatizing reactions from family may be more distressing to minorities as compared to their non-Hispanic White counterparts. Many ethnic groups do not tolerate members obtaining help outside of their families and close-knit communities, which is consistent with reports of greater difficulty in finding an acceptable mental health provider. In fact, families may be more willing to tolerate OC symptoms than the afflicted individual obtaining formal mental health services.

On the whole, individuals with OCD, trichotillomania, and skinpicking disorder experienced similar barriers to treatment at similar rates. However, a few key distinctions between groups emerged. Individuals with OCD were approximately twice as likely to report a fear of being involuntarily hospitalized. While the reasons behind the fears were not assessed, it is possible that the increased endorsement of this item among individuals with OCD relates to the fact that the content of OCD can manifest in socially and morally reprehensible ways. Further support for this hypothesis was found by the result that individuals with high severity of violent or sexual obsessions were significantly more likely to report a fear of involuntarily hospitalization compared to those with other types of obsessions. It is logical that individuals who suffer from intrusive thoughts of harming other people and/or obsessions related to pedophilia, rape, or other repugnant sexual acts may not be aware that these fears are common manifestations of OCD. Even if they do believe they have OCD, such individuals may be concerned about misdiagnosis [18] and subsequent involuntary hospitalization. Additionally, it was found that participants with a higher severity of unacceptable thoughts (violent, sexual or religious obsessions) were more likely to endorse stigma/shame or concerns about treatment as barriers compared to those with obsessions related to contamination or symmetry. While differences were found between the type of unacceptable thought and specific barriers to treatment, individuals with violent, sexual or religious obsessions appear to be a particularly vulnerable group that is more susceptible to stigma and shame surrounding treatment. Thus, addressing issues of stigma and shame in patients initially presenting for treatment of OC related disorders may be critical, particularly for those with unacceptable/ taboo thoughts. Specific targeted shame-reducing strategies may be an important therapeutic intervention to facilitate treatment in such individuals.

Those with OCD were at least twice as likely to report being unable to get an appointment compared to those with TTM or SPD. Finding effective treatment for OCD and related conditions can be difficult. Taylor et al. [19] note that many individuals do not have access to cognitive-behavioral therapy for OCD because of a lack of therapists who use empirically-supported treatments, particularly in rural areas. Nakagawa et al. [20] notes that most clinicians do not receive training in empirically-supported treatments in general [21], resulting in a lack of behavioral therapists who can effectively treat OCD, particularly for individuals without overt rituals or the more easily recognized symptoms [22]. As a result, many have difficulty locating qualified providers in their communities.

However, it was not assessed whether participants previously tried to obtain an appointment. Therefore, it cannot be determined whether individuals with OCD have more difficulty getting an appointment compared to those with TTM or SPD or whether individuals with trichotillomania or skin-picking disorder did not report difficulty getting an appointment because they have not previously sought treatment. Preliminary evidence was found for the latter, since individuals with skin-picking disorder were significantly more likely to think treatment would be too inconvenient/take too much time compared to those with OCD. Furthermore, a similar trend was found for participants with trichotillomania believing treatment would be too inconvenient compared to those with OCD.

Limitations

As previously mentioned, treatment history was not obtained. Therefore, it is unclear how many participants are currently or have ever been in treatment, and how this experience may have impacted responses. It is unknown if the barriers to treatment endorsed by each participant permanently or temporarily impeded treatment initiation or had any effect on engagement in treatment. In fact, it could be that greater distress surrounding unacceptable/taboo thoughts results in earlier treatment-seeking [4]. Additionally, the study sample was comprised of individuals who visited the specific websites that displayed the study link; therefore, the study sample may not be representative of the treatment-seeking population or the afflicted population at large, and thus caution must be taken when considering these findings.

Future Directions

Since approximately half of participants from each of the three mental health conditions reported the belief that treatment would not work, one important avenue for further research should be to assess the efficacy of a psycho-educational-based intervention targeted to increase awareness regarding first-line treatment approaches, and their strong efficacy. Previous research has shown that beliefs surrounding the cause of OCD can heavily influence perceptions about the proper avenues for treatment, so accurate information about the cause of these disorders should be a component of any educational intervention [23].

Future work should ask individuals to not only select which treatment barriers impede them from seeking help but to also rank the strength of each factor. For example, while someone may select both being concerned about the cost and feeling ashamed of their problems, it is possible that the cost-related concern is of minimal impact whereas the driving force delaying treatment may be primarily related to shame or vice versa. The present study could not make such a determination.

A study of demographic factors related to obtaining treatment is also an important area in need of further study. This investigation did not include enough ethnic/racial minorities to examine differences in barriers to treatment by specific ethnic/racial group, yet previous work has shown that concerns about discrimination may be a deterrent to help-seeking for OCD [2]. As prior studies have implicated cost of treatment as a major barrier, the role of SES and insurance coverage are also important factors that require additional exploration. A more comprehensive understanding of treatment barriers and how they affect various sub-populations among those afflicted will provide important clinical and public health related information.

References

  1. http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/ocd.pdf
  2. Williams M, Powers M, Foa E (2012) Psychological Treatment for Obsessive-Compulsive Disorder, Handbook of Evidence-Based Practice in Clinical Psychology. 10: 0470335440. 
  3. Nathan PE, Gorman JM (2007) A Guide to Treatments that Work. New York: Oxford University Press.
  4. Grant JE, Pinto A, Gunnip M, Mancebo MC, Eisen JL, et al. (2006) Sexual obsessions and clinical correlates in adults with obsessive-compulsive disorder.  Compr Psychiatry 47: 325-329.
  5. Angst J, Gamma A, Endrass J, Goodwin R, Ajdacic V, et al. (2003). Obsessive-compulsive severity spectrum in the community: Prevalence, comorbidity, and course. European Archives of Psychiatry and Clinical Neuroscience, 254: 156-164.
  6. Goodman W (2006) The Course of Obsessive-Compulsive Disorder (OCD). Psych Central.
  7. Besiroglu L, Agargun MY (2006) The correlates of healthcare seeking behavior in obsessive-compulsive disorder: a multidimensional approach.  Turk PsikiyatriDerg 17: 213-222.
  8. Marques L, LeBlanc NJ, Weingarden HM, Timpano KR, Jenike M, et al. (2010) Barriers to treatment and service utilization in an internet sample of individuals with obsessive-compulsive symptoms. Depress Anxiety 27: 470-475.
  9. Goodwin R, Koenen KC, Hellman F, Guardino M, Struening E (2002) Helpseeking and access to mental health treatment for obsessive-compulsive disorder.  ActaPsychiatrScand 106: 143-149.
  10. Williams MT, Domanico J, Marques L, Leblanc NJ, Turkheimer E (2012) Barriers to treatment among African Americans with obsessive-compulsive disorder.  J Anxiety Disord 26: 555-563.
  11. Williams MT, Mugno B, Franklin M, Faber S (2013) Symptom dimensions in obsessive-compulsive disorder: phenomenology and treatment outcomes with exposure and ritual prevention.  Psychopathology 46: 365-376.
  12. Cathey AJ, Wetterneck CT (2013) Stigma and disclosure of intrusive thoughts about sexual themes. Journal of Obsessive-Compulsive and Related Disorders 2: 439-443.
  13. Weingarden H, Renshaw KD (2015) Shame in the obsessive compulsive related disorders: a conceptual review.  J Affect Disord 171: 74-84.
  14. Hong J, Bravo M, Lee EB, Wetterneck CT, Bjorgvinsson T, et al. (2013) Examination of the effectiveness of a short OCD screener. Presented at the 20th annual conference of the International Obsessive-Compulsive Disorder Foundation.
  15. Woods DW, Wetterneck CT, Flessner CA (2006) A controlled evaluation of acceptance and commitment therapy plus habit reversal for trichotillomania.  Behav Res Ther 44: 639-656.
  16. Williams MT, Sawyer B, Ellsworth M, Singh R, Tellawi G (in press). Obsessive-Compulsive Disorder in Ethnoracial Minorities: Attitudes, Stigma, & Barriers to Treatment, Handbook of Obsessive-Compulsive Related Disorders.
  17. Smith AH, Wetterneck CT, Short MB, Hart JM, Little TE (2010) Predictors of distress in the OCD subtypes, 44th annual meeting of the Association for Behavioral and Cognitive Therapies, San Francisco, CA.
  18. Glazier K, Calixte RM, Rothschild R, Pinto A (2013) High rates of OCD symptom misidentification by mental health professionals.  Ann Clin Psychiatry 25: 201-209.
  19. Taylor S, Thordarson DS, Spring T, Yeh AH, Corcoran KM, et al. (2003) Telephone-administered cognitive behavior therapy for obsessive-compulsive disorder. Cognitive Behaviour Therapy 32: 13-25.
  20. Nakagawa A, Marks IM, Park JM, Bachofen M, Baer L, et al. (2000) Self-treatment of obsessive-compulsive disorder guided by manual and computer-conducted telephone interview.  J TelemedTelecare 6: 22-26.
  21. Barlow DH, Levitt JT, Bufka LF (1999) The dissemination of empirically supported treatments: a view to the future.  Behav Res Ther 37 Suppl 1: S147-162.
  22. O’Connor K, Freeston MH, Garea D, Careau Y, Dufour MJ, et al. (2005) Group versus individual treatment in obsessions without compulsions. Clinical Psychology and Psychotherapy 12: 87-96.
  23. Coles ME, Coleman SL (2010) Barriers to treatment seeking for anxiety disorders: initial data on the role of mental health literacy.  Depress Anxiety 27: 63-71.
Citation: Glazier K, Wetterneck C, Singh S, Williams M (2015) Stigma and Shame as Barriers to Treatment for Obsessive-Compulsive and Related Disorders. J Depress Anxiety 4:191.

Copyright: © 2015 Glazier K, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.