Barriers to Seeking Treatment in Individuals Experiencing Obsessive-compulsive Disorder

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Mental illness can be defined as a range of conditions that interfere with the ability of an individual to function in daily life, causing distress and changes in emotions and behaviour (American Psychiatric Association [APA], 2013). Of these illnesses, Obsessive Compulsive Disorder (OCD) is one that affects around 2.3% of the population (Ruscio, Stein, Chiu & Kessler, 2008). OCD is characterised by the existence of obsessions – constant disruptive thoughts and urges causing anxiousness – or compulsions – recurrent patterns of behaviour or mental acts that are performed to reduce the negative feelings associated with obsessions that can become problematic, or both (APA, 2013). This disorder usually entails a lack of control over the frequency and severity of obsessions or compulsions, to the extent that they impair an individual’s ability to function normally (Norberg, Calamari, Cohen & Riemann, 2008).

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Despite the growing number of effective treatment options for OCD (Abramowitz, 1997; Safak et al., 2014), only a limited number of individuals suffering from OCD will seek support and treatment. In one study, it has been reported that only 13% were receiving medication or cognitive behavioural therapy for their OCD symptoms (Torres et al., 2007). Another study conducted with a multiracial Asian population, found that 89.8% of those with lifetime OCD never sought treatment for their disorder, despite the average number of days out of role attributed to the symptoms being 25.4 days in a 12-month period (Subramaniam, Abdin, Vaingankar, Chong, 2012). Additionally, OCD has been reported to causing lower quality of life than other disorders (Norberg, Calamari, Cohen & Riemann, 2008). This highlights the severity of this matter, and the need to address why treatment is being avoided or delayed, and how we need to overcome this issue. Thus, this essay seeks to outline three main factors that act as barriers for the treatment of OCD, from the perspective of sufferers themselves.

Stigma has been identified as one of the biggest obstacles for seeking treatment and can be defined as the degradation of an individual in the eyes of society as a result of a possessing a certain characteristic that is portrayed negatively, in this case, having a mental illness. Despite the impairments OCD can bring about in normal functioning, studies have reported an average of about seven years spent without seeking treatment (Poyraz et al., 2015). This factor can be attributed to the lack of awareness about OCD within most communities allowing the normalisation of discrimination against sufferers. This may initiate a fear of being ‘labelled’ by the public as “crazy” or “dangerous” within sufferers (Weingarden & Renshaw, 2015). It is believed that the feeling of shame about OCD arises from the symptoms and compulsions experienced by patients, rather than simply having a mental illness. Specifically, symptoms with aggressive, violent or sexual obsessions and compulsions have been found to produce higher feelings of shame (Poyraz et al., 2015). Additionally, patients with these types of obsessions are more likely to seek treatment earlier than those with others (e.g. excessive checking and hand washing).

Unfortunately, it was observed that the obstructive effects of this stigma and shame continue into regular tasks too. In an experiment, patients with OCD displayed heightened experiences of anxiousness, guilt and shame when presented with negative or ambiguous feedback on performance-based tasks than those in the healthy control group (Becker et al., 2014). Many studies consistently reported significant relationships that portray stigma as a major barrier to treatment. One involves 53.2% of participants who agreed that “feeling ashamed of my problems” was the reason they refused to seek help and 58.2% attributed this to “feeling ashamed of needing help for my problems (Marques et al., 2010). In a different study, 34.6% stated that they “feel ashamed by the thought content” of obsessions and compulsions (Belloch et al., 2009). This can cause reluctance to share the issue with someone due to the apprehension of being misjudged. However, these studies were subject to some limitations, the sample for Marques’ study consisted of 79.4% females and 85.1% of the participants were Caucasian. This limits the ability to generalise the results to the wider and more diverse population. Contrastingly, one study found that only 12.5% of participants admitted that the stigma associated with having OCD was the reason they deferred treatment (Poyraz et al., 2015). This inconsistency however may have been caused by a limitation to this study, as most other studies produced similar results. Some of the studies also failed to distinguish between those with only OCD and individuals who may have sought treatment for issues other than OCD. Comorbidity in this case may have affected the results and therefore future studies should ensure this is addressed and only patients with ‘pure’ OCD are assessed. Furthermore, a more diverse sample will help minimise the extraneous variable of individual participant differences on the results.

Moreover, the perception of the disorder has been acknowledged as a significant barrier to treatment. This refers to the ideas and judgements individuals have about the disorder, including its symptoms and consequences. In essence, individuals who have a limited knowledge of illness may fail to identify its symptoms. This is particularly true for those who have an early-onset of OCD as they generally perceive these symptoms as characteristics of personality. Poyraz’s (2015) study found a significant negative relation (p = .001) between age of onset and duration of untreated illness (DUI), whereby the earlier the onset of OCD, the longer it took to seek treatment and assistance.

There have been consistent findings across research that demonstrate patients delay treatment as they believed their obsessions and compulsions were manageable, and could be treated by themselves (Marques et al., 2010; Belloch et al., 2009). This highlights the lack of knowledge about the detrimental consequences of OCD, supported by the notion that those who sought treatment experienced worse quality of life and more severe symptoms, upon realising that it is not normal. 60.4% of the participants in Poyraz’s (2015) study attributed the delay in help seeking because they thought the symptoms were not associated with an illness. Additionally, in another experiment 50% of participants selected the option ‘I was convinced that the problem was temporary’, and 34.6% ascribed this delay to the opinion that ‘I felt I could control the problem’ or ‘I believed my behaviour/thoughts were not serious’ (Belloch et al., 2009). While this study had many strengths, one being that the sample only consisted of individuals with no comorbid diseases, and all seeking assistance for the first time, it did contain some limitations. A questionnaire was developed by researchers specifically for this study, however it was not assessed by other professionals for its quality. This limitation could easily be addressed in future studies by making use of approved measures. All these results highlight the lack of accurate information and awareness provided to the community about OCD. One particular investigation concluded that individuals with an inadequate grasp of the illness were two times as likely to delay treatment seeking than those who demonstrate a sufficient understanding of OCD (Demet et al., 2010). As well as sufferers themselves, relatives and family members should be made aware of the features of OCD as they are likely the first contact for help.

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Finally, financial barriers can impede the ability of individuals to treat their disorder. Because this disorder is not determined by financial status, it affects a wide range of individuals with differing socio-economic circumstances. Therefore, financial barriers are considered important by some groups only. In some studies, most participants report financial circumstances as a deterrent to seeking treatment for OCD symptoms (Marques et al., 2010). Numerous studies in this area are conducted using participants from a wide range of cultures. One such study, (Williams, Domanico, Marques, Leblanc, Turkheimer, 2012), uses the Barriers to Treatment Questionnaire (Marques et al., 2010) to assist participants in identifying relevant obstacles. This study mainly compared results between White Americans and African Americans and found that approximately half of both ethnicities expressed concerns about the cost of treatment in relation to a lack of insurance coverage (41.67% and 46.48%, respectively). Particularly, wealthier participants who could afford private health cover, and poorer participants who had some form of government assistance were less concerned about the cost of treatment. One limitation to this research is that all participants are from the same location geographically and is therefore limited in scope and like other studies, requires more diversity. On the other hand, these issues are addressed and corrected by a study conducted by () which consists of 139 white British individuals, 61 black Africans, 46 black Caribbeans and 47 Indians. Contrarily, it was conducted in the UK which can potentially eradicate the disadvantages brought about by limited geographical locations and healthcare systems, as most research in this area has been conducted in America. Differently, researchers reported a significantly lower number of responses attributing financial costs as a barrier, with only 5.1% White participants agreeing, 13.8% Black Africans, 14% Black Carribeans and only 4.4% Indians. These considerable differences in results highlight the need for further studies to be conducted in different areas with a wide range of participants in order for a conclusion to be reached about the role of financial costs in seeking treatment.

It is unfortunate that despite the detrimental consequences of this illness on the community, sufferers do not voice their concerns soon enough for effective treatment to be provided to them. Future research in this area should work to include larger samples with more diversity, consisting participants with a larger range of socio-economic and ethnic backgrounds. This will essentially make results more generalisable to the community, thus helping create more effective treatment options that can be applied to most patients. Research in this area contain important implications that require addressing in order to minimise the repercussions of Obsessive-Compulsive Disorder. A lack of treatment for sufferers will have negative effects on the health status of countries. More importantly, it can damage the lives of not only its victims, but those associated with the patient. Government funding in this area is essential in making services for accessible for those who struggle to afford it. This issue can also be reduced by an increase in awareness about OCD and its symptoms, as this will help individuals determine whether they’re likely suffering or no. Additionally, increased awareness can assist in demonstrating the prevalence of many mental health issues in the community, which can help normalise them and lead to an increased support from community members who will then work to improve circumstances for OCD sufferers through activities like fundraising, campaigns and simple social support. This will further reduce the stigma associated with a diagnosis of OCD, encouraging its patients to seek intervention earlier. Once negative thoughts are eradicated in the minds of OCD sufferers, this can potentially prevent comorbidity of illnesses like depression and anxiety.

References

Mental illness can be defined as a range of conditions that interfere with the ability of an individual to function in daily life, causing distress and changes in emotions and behaviour (American Psychiatric Association [APA], 2013). Of these illnesses, Obsessive Compulsive Disorder (OCD) is one that affects around 2.3% of the population (Ruscio, Stein, Chiu & Kessler, 2008). OCD is characterised by the existence of obsessions – constant disruptive thoughts and urges causing anxiousness – or compulsions – recurrent patterns of behaviour or mental acts that are performed to reduce the negative feelings associated with obsessions that can become problematic, or both (APA, 2013). This disorder usually entails a lack of control over the frequency and severity of obsessions or compulsions, to the extent that they impair an individual’s ability to function normally (Norberg, Calamari, Cohen & Riemann, 2008).

Despite the growing number of effective treatment options for OCD (Abramowitz, 1997; Safak et al., 2014), only a limited number of individuals suffering from OCD will seek support and treatment. In one study, it has been reported that only 13% were receiving medication or cognitive behavioural therapy for their OCD symptoms (Torres et al., 2007). Another study conducted with a multiracial Asian population, found that 89.8% of those with lifetime OCD never sought treatment for their disorder, despite the average number of days out of role attributed to the symptoms being 25.4 days in a 12-month period (Subramaniam, Abdin, Vaingankar, Chong, 2012). Additionally, OCD has been reported to causing lower quality of life than other disorders (Norberg, Calamari, Cohen & Riemann, 2008). This highlights the severity of this matter, and the need to address why treatment is being avoided or delayed, and how we need to overcome this issue. Thus, this essay seeks to outline three main factors that act as barriers for the treatment of OCD, from the perspective of sufferers themselves.

Stigma has been identified as one of the biggest obstacles for seeking treatment and can be defined as the degradation of an individual in the eyes of society as a result of a possessing a certain characteristic that is portrayed negatively, in this case, having a mental illness. Despite the impairments OCD can bring about in normal functioning, studies have reported an average of about seven years spent without seeking treatment (Poyraz et al., 2015). This factor can be attributed to the lack of awareness about OCD within most communities allowing the normalisation of discrimination against sufferers. This may initiate a fear of being ‘labelled’ by the public as “crazy” or “dangerous” within sufferers (Weingarden & Renshaw, 2015). It is believed that the feeling of shame about OCD arises from the symptoms and compulsions experienced by patients, rather than simply having a mental illness. Specifically, symptoms with aggressive, violent or sexual obsessions and compulsions have been found to produce higher feelings of shame (Poyraz et al., 2015). Additionally, patients with these types of obsessions are more likely to seek treatment earlier than those with others (e.g. excessive checking and hand washing).

Unfortunately, it was observed that the obstructive effects of this stigma and shame continue into regular tasks too. In an experiment, patients with OCD displayed heightened experiences of anxiousness, guilt and shame when presented with negative or ambiguous feedback on performance-based tasks than those in the healthy control group (Becker et al., 2014). Many studies consistently reported significant relationships that portray stigma as a major barrier to treatment. One involves 53.2% of participants who agreed that “feeling ashamed of my problems” was the reason they refused to seek help and 58.2% attributed this to “feeling ashamed of needing help for my problems (Marques et al., 2010). In a different study, 34.6% stated that they “feel ashamed by the thought content” of obsessions and compulsions (Belloch et al., 2009). This can cause reluctance to share the issue with someone due to the apprehension of being misjudged. However, these studies were subject to some limitations, the sample for Marques’ study consisted of 79.4% females and 85.1% of the participants were Caucasian. This limits the ability to generalise the results to the wider and more diverse population. Contrastingly, one study found that only 12.5% of participants admitted that the stigma associated with having OCD was the reason they deferred treatment (Poyraz et al., 2015). This inconsistency however may have been caused by a limitation to this study, as most other studies produced similar results. Some of the studies also failed to distinguish between those with only OCD and individuals who may have sought treatment for issues other than OCD. Comorbidity in this case may have affected the results and therefore future studies should ensure this is addressed and only patients with ‘pure’ OCD are assessed. Furthermore, a more diverse sample will help minimise the extraneous variable of individual participant differences on the results.

Moreover, the perception of the disorder has been acknowledged as a significant barrier to treatment. This refers to the ideas and judgements individuals have about the disorder, including its symptoms and consequences. In essence, individuals who have a limited knowledge of illness may fail to identify its symptoms. This is particularly true for those who have an early-onset of OCD as they generally perceive these symptoms as characteristics of personality. Poyraz’s (2015) study found a significant negative relation (p = .001) between age of onset and duration of untreated illness (DUI), whereby the earlier the onset of OCD, the longer it took to seek treatment and assistance.

There have been consistent findings across research that demonstrate patients delay treatment as they believed their obsessions and compulsions were manageable, and could be treated by themselves (Marques et al., 2010; Belloch et al., 2009). This highlights the lack of knowledge about the detrimental consequences of OCD, supported by the notion that those who sought treatment experienced worse quality of life and more severe symptoms, upon realising that it is not normal. 60.4% of the participants in Poyraz’s (2015) study attributed the delay in help seeking because they thought the symptoms were not associated with an illness. Additionally, in another experiment 50% of participants selected the option ‘I was convinced that the problem was temporary’, and 34.6% ascribed this delay to the opinion that ‘I felt I could control the problem’ or ‘I believed my behaviour/thoughts were not serious’ (Belloch et al., 2009). While this study had many strengths, one being that the sample only consisted of individuals with no comorbid diseases, and all seeking assistance for the first time, it did contain some limitations. A questionnaire was developed by researchers specifically for this study, however it was not assessed by other professionals for its quality. This limitation could easily be addressed in future studies by making use of approved measures. All these results highlight the lack of accurate information and awareness provided to the community about OCD. One particular investigation concluded that individuals with an inadequate grasp of the illness were two times as likely to delay treatment seeking than those who demonstrate a sufficient understanding of OCD (Demet et al., 2010). As well as sufferers themselves, relatives and family members should be made aware of the features of OCD as they are likely the first contact for help.

Finally, financial barriers can impede the ability of individuals to treat their disorder. Because this disorder is not determined by financial status, it affects a wide range of individuals with differing socio-economic circumstances. Therefore, financial barriers are considered important by some groups only. In some studies, most participants report financial circumstances as a deterrent to seeking treatment for OCD symptoms (Marques et al., 2010). Numerous studies in this area are conducted using participants from a wide range of cultures. One such study, (Williams, Domanico, Marques, Leblanc, Turkheimer, 2012), uses the Barriers to Treatment Questionnaire (Marques et al., 2010) to assist participants in identifying relevant obstacles. This study mainly compared results between White Americans and African Americans and found that approximately half of both ethnicities expressed concerns about the cost of treatment in relation to a lack of insurance coverage (41.67% and 46.48%, respectively). Particularly, wealthier participants who could afford private health cover, and poorer participants who had some form of government assistance were less concerned about the cost of treatment. One limitation to this research is that all participants are from the same location geographically and is therefore limited in scope and like other studies, requires more diversity. On the other hand, these issues are addressed and corrected by a study conducted by () which consists of 139 white British individuals, 61 black Africans, 46 black Caribbeans and 47 Indians. Contrarily, it was conducted in the UK which can potentially eradicate the disadvantages brought about by limited geographical locations and healthcare systems, as most research in this area has been conducted in America. Differently, researchers reported a significantly lower number of responses attributing financial costs as a barrier, with only 5.1% White participants agreeing, 13.8% Black Africans, 14% Black Carribeans and only 4.4% Indians. These considerable differences in results highlight the need for further studies to be conducted in different areas with a wide range of participants in order for a conclusion to be reached about the role of financial costs in seeking treatment.

It is unfortunate that despite the detrimental consequences of this illness on the community, sufferers do not voice their concerns soon enough for effective treatment to be provided to them. Future research in this area should work to include larger samples with more diversity, consisting participants with a larger range of socio-economic and ethnic backgrounds. This will essentially make results more generalisable to the community, thus helping create more effective treatment options that can be applied to most patients. Research in this area contain important implications that require addressing in order to minimise the repercussions of Obsessive-Compulsive Disorder. A lack of treatment for sufferers will have negative effects on the health status of countries. More importantly, it can damage the lives of not only its victims, but those associated with the patient. Government funding in this area is essential in making services for accessible for those who struggle to afford it. This issue can also be reduced by an increase in awareness about OCD and its symptoms, as this will help individuals determine whether they’re likely suffering or no. Additionally, increased awareness can assist in demonstrating the prevalence of many mental health issues in the community, which can help normalise them and lead to an increased support from community members who will then work to improve circumstances for OCD sufferers through activities like fundraising, campaigns and simple social support. This will further reduce the stigma associated with a diagnosis of OCD, encouraging its patients to seek intervention earlier. Once negative thoughts are eradicated in the minds of OCD sufferers, this can potentially prevent comorbidity of illnesses like depression and anxiety.

References

  • Abramowitz, J. (1997). Effectiveness of psychological and pharmacological treatments for obsessive-compulsive disorder: A quantitative review. Journal of Consulting and Clinical Psychology, 65(1), 44-52. doi: 10.1037/0022-006X.65.1.44
  • American Psychiatric Association. (2013) Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA. doi: https://doi.org/10.1176/appi.books.9780890425596
  • Becker, M., Nitsch, A., Schlösser, R., Koch, K., Schachtzabel, C., Wagner, G., . . . Straube, T. (2014). Altered emotional and BOLD responses to negative, positive and ambiguous performance feedback in OCD. Social Cognitive and Affective Neuroscience, 9(8), 1127-1133. doi: 10.1093/scan/nst095
  • Belloch A., Valle G., Morillo C., Carrió C., & Cabedo E. (2009). To seek advice or not to seek advice about the problem: The help-seeking dilemma for obsessive-compulsive disorder. Social Psychiatry and Psychiatric Epidemiology, 44(4), 257-264. doi: 10.1007/s00127-008-0423-0
  • Demet M. M., Deveci A., Taşkın E. O., Erbay Dündar P., Türel Ermertcan A., Mızrak Demet S., . . . Öztürkcan. (2010). Risk factors for delaying treatment seeking in obsessive-compulsive disorder. Comprehensive Psychiatry, 51(5), 480-485. doi: https://doi-org.ezproxy.lib.monash.edu.au/10.1016/j.comppsych.2010.02.008
  • Fernández de la Cruz, L., Kolvenbach, S., Vidal-Ribas, P., Jassi, A., Llorens, M., Patel, N., . . . Mataix-Cols, D. (2016). Illness perception, help-seeking attitudes, and knowledge related to obsessive–compulsive disorder across different ethnic groups: A community survey. Social Psychiatry and Psychiatric Epidemiology, 51(3), 455-464. doi: https://doi-org.ezproxy.lib.monash.edu.au/10.1007/s00127-015-1144-9
  • Marques, L., LeBlanc, N., Weingarden, H., Timpano, K., Jenike, M., & Wilhelm, S. (2010). Barriers to treatment and service utilization in an internet sample of individuals with obsessive–compulsive symptoms. Depression and Anxiety, 27(5), 470-475. doi: https://doi-org.ezproxy.lib.monash.edu.au/10.1002/da.20694
  • Norberg, M., Calamari, J., Cohen, R., & Riemann, B. (2008). Quality of life in obsessive‐compulsive disorder: An evaluation of impairment and a preliminary analysis of the ameliorating effects of treatment. Depression and Anxiety, 25(3), 248-259. doi: https://doi-org.ezproxy.lib.monash.edu.au/10.1002/da.20298
  • Poyraz C. A., Turan S., Sağlam N. G., Batun G. C., Yassa A., & Duran A. (2015). Factors associated with the duration of untreated illness among patients with obsessive compulsive disorder. Comprehensive Psychiatry, 58, 88-93.
  • Ruscio A.M., Stein D. J., Chiu W. T., & Kessler R.C. (2008). The epidemiology of obsessive-compulsive disorder in the National Comorbidity Survey Replication. Molecular Psychiatry, 15(1), 53-63. doi: 10.1038/mp.2008.94
  • Safak, Karadere, Özcan, Türkçapar, Kuru, & Yücens. (2014). The Effectiveness of Cognitive Behavioral Group Psychotherapy for Obsessive-Compulsive Disorder. Turk Psikiyatri Dergisi, 25(4), 225-33. Retrieved from https://search-proquest-com.ezproxy.lib.monash.edu.au/docview/1660506431/fulltext/9E29136AD5C6429BPQ/1?accountid=12528
  • Subramaniam, M., Abdin, E., Vaingankar, J., & Chong, A. (2012). Obsessive–compulsive disorder: Prevalence, correlates, help-seeking and quality of life in a multiracial Asian population. Social Psychiatry and Psychiatric Epidemiology, 47(12), 2035-2043. doi: 10.1007/s00127-012-0507-8
  • Torres, A., Prince, M., Bebbington, P., Bhugra, D., Brugha, T., Farrell, M., . . . Singleton, N. (2007). Treatment Seeking by Individuals with Obsessive-Compulsive Disorder from the British Psychiatric Morbidity Survey of 2000. Psychiatric Services, 58(7), 977-982. doi: 10.1176/ps.2007.58.7.977
  • Weingarden H., & Renshaw K. D. (2015). Shame in the obsessive-compulsive related disorders: A conceptual review. Journal of Affective Disorders, 171, 74-84. doi: http://dx.doi.org/10.1016/j.jad.2014.09.010
  • Williams M. T., Domanico J., Marques L., Leblanc N. J., & Turkheimer E. (2012). Barriers to treatment among African Americans with obsessive-compulsive disorder. Journal of Anxiety Disorders, 26(4), 555-563. doi: https://doi-org.ezproxy.lib.monash.edu.au/10.1016/j.janxdis.2012.02.009

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