Many individuals with OCD suffer for years with significantly diminished quality of life before seeking treatment, if they seek help at all, likely due to a complex interplay of powerful factors influencing their decision to pursue support. To better understand these factors, it is crucial to engage people with OCD directly in comprehensive discussions about their experiences with help-seeking.
Robinson, K. J., Rose, D., & Salkovskis, P. M. (2017). Seeking help for obsessive compulsive disorder (OCD): a qualitative study of the enablers and barriers conducted by a researcher with personal experience of OCD. Psychology and Psychotherapy: Theory, Research and Practice, 90(2), 193-211.
Key Points
- Obsessive Compulsive Disorder (OCD) can be highly disabling, yet many people delay seeking treatment for years or never seek help at all.
- This qualitative study identified a wide range of barriers that cause people to delay seeking help for OCD, including stigma, lack of knowledge about OCD, and concerns about treatment.
- A smaller number of enablers were found that encourage people to seek help, such as being supported by others, reaching a crisis point, and encountering personal accounts of OCD in the media.
- The research provides important insights into the complex factors influencing help-seeking for OCD, but it has some limitations, such as relying on a volunteer sample.
Rationale
OCD is a severe mental disorder that causes significant impairment, yet previous studies have found substantial delays between the onset of OCD and seeking treatment, ranging from an average of 3.28 years in Spain (Belloch et al., 2009) to 17 years in the US (Pinto et al., 2006).
While some research using short questionnaires has examined reasons for these delays, in-depth qualitative studies are lacking (Robinson et al., 2017).
This qualitative study aimed to address that gap by identifying the barriers and enablers to seeking treatment for OCD. Understanding these factors in detail is vital for developing interventions to encourage earlier help-seeking.
Method
- This was a qualitative, exploratory study using in-depth, semi-structured individual interviews. Participants were recruited through the charity OCD-UK.
- A researcher with personal experience of OCD conducted the interviews and analyzed them using thematic analysis.
- The researcher’s personal experience was an important part of the study methodology, informing the design, interviews, and analysis.
Sample
17 people with OCD participated – 11 women and 6 men aged 21-57. 15 were White British. Education levels varied from GCSEs to postgraduate degrees. 8 participants were working, 2 were students, and 7 were not working.
Age of OCD onset ranged from 7-48 years old. Delays in seeking treatment after OCD significantly interfered with life ranged from a few weeks to 20 years (mean 7 years).
Theme 1: Barriers to Treatment
Five main barriers to seeking help were identified:
1. Stigma
The study identified stigma as a major barrier to seeking help for OCD. Participants feared reactions from various sources, including family, friends, colleagues, employers, and healthcare providers.
Many went to great lengths to hide their OCD, with some keeping it secret from close family members and partners for years.
Reasons for not wanting to tell others included embarrassment, shame, and fear of having a mental health diagnosis on their medical record, which they worried could lead to discrimination.
Some participants also wanted to shield their families from the knowledge of their mental illness, while others reported that their families were reluctant to acknowledge the participant had a disorder, possibly due to feelings of failure or concern about the severity of the problem.
2. Internal/cognitive factors
The study identified several internal/cognitive factors that caused people to delay seeking help for OCD. These factors were related to people’s personal appraisals of their problem or their internal state. Six subthemes emerged:
- Believing the OCD was not severe enough to warrant treatment, even when it was causing significant interference in daily life.
- Feeling they could manage the problem on their own without professional help.
- Reluctance to accept that there was a problem or believing it would resolve on its own.
- Not considering the possibility of seeking help, often because the OCD had become so ingrained in daily life.
- Feeling undeserving of treatment, either because they perceived others as having greater needs or the OCD was not worsening.
- Feeling too vulnerable or emotionally exhausted to discuss the OCD with a healthcare provider.
These internal/cognitive factors highlight the complex thought processes and emotions that can hinder individuals with OCD from pursuing treatment, even when the disorder is causing substantial distress and impairment.
3. Lack of knowledge about OCD – not knowing what the problem was
A significant barrier to seeking help for OCD was a lack of knowledge or information about the condition, both among participants themselves and their families. This theme was divided into two subthemes:
- Participant’s lack of understanding: Four participants reported having no idea what their symptoms represented or that they had a recognized disorder. This lack of awareness prevented them from seeking help when their symptoms first emerged.
- Family’s lack of understanding: Four participants described how their families were unaware that the participant’s behaviors and thoughts were indicative of OCD. In some cases, families realized the participant was “a bit strange” but did not understand the exact nature of the problem. This lack of knowledge within the family likely contributed to delays in seeking treatment.
4. Concerns about treatment and whether GPs would understand
Participants identified several barriers related to their GP or the anticipated treatment that delayed their help-seeking. These barriers were categorized into three subthemes:
- Uncertainty about GP’s knowledge: Two participants expressed doubts about whether their GP would be able to identify and understand their OCD symptoms correctly. This uncertainty about the doctor’s expertise in OCD acted as a barrier to seeking help. One participant only felt comfortable approaching their GP after they had self-diagnosed and gained a good understanding of OCD.
- Concern about GP’s reaction: Two participants reported concerns about how their doctor might respond to their help-seeking for OCD. This barrier is distinct from the previously mentioned stigma-related barriers, where participants avoided disclosing to their GP due to feelings of embarrassment or shame. Here, the focus was on the uncertainty and apprehension regarding the GP’s potential reaction.
- Concerns about treatment: Two participants expressed concerns about the treatment they might be offered, which contributed to their delay in seeking help. One participant was apprehensive about being prescribed medication, while the other was hesitant about engaging in the potentially challenging process of cognitive-behavioral therapy (CBT) and the long journey to recovery.
5. Fear of being “criminalized”
For three participants, fear of criminalization was a significant barrier to seeking help for their OCD. These individuals experienced intrusive thoughts related to harming or sexually abusing children.
They feared that disclosing these thoughts to professionals would lead to severe consequences, such as being involuntarily committed to a psychiatric hospital, imprisoned, or having their children taken away from them.
One participant, whose intrusive thoughts involved sexually abusing children, was afraid that the authorities would mistakenly believe they were a pedophile.
The intense fear of being perceived as a “monster” and facing serious legal repercussions prevented these participants from revealing their symptoms to anyone, greatly delaying their help-seeking efforts.
Theme 2: Enabling Treatment
Five main themes were identified as enablers to seeking help:
1. Being supported or urged to seek treatment
Being supported or encouraged to seek treatment was a significant enabling factor for participants in this study.
This support came from various sources, including partners, family members, friends, and online OCD support communities.
‘I can remember writing on the forums on the websites, saying, you know, I’m going to the GP
and … everyone thought, ‘Oh, well done’. You know. ‘You’ll be fine’. ‘Don’t be scared’. And
getting loads of replies back.’
2. Crisis / crunch point
Eight participants said that it was reaching a crisis / crunch point that finally pushed them
to seek treatment.
‘I got to another stage where, um, the head wasn’t coping again, and I was getting extremely
depressed. The only reason I went to the doctor in the first place was I left my [partner] a note
… and I’d been drinking one night, and left [her/him] a note, ‘I want to die’. I couldn’t cope.
And I thought I wanted to take an overdose. So my [partner] took me to see my doctor. Which
was a good thing.’
3. Media / information
Six participants discovered they had OCD through various media sources, including television programs, newspaper articles, and leaflets, none of which were associated with the National Health Service.
Although these participants had not sought help for their OCD before learning about the condition through media, they all subsequently sought treatment, either quickly or after several years.
4. Confidence in GP / mental health professionals
Three participants expressed having confidence that their GP or mental health professionals would be able to help them with their OCD. This confidence served as an enabling factor in their decision to seek treatment.
One participant, who had delayed seeking help for over three years, intentionally selected a doctor who they remembered as being a good listener. This decision proved beneficial, as the doctor was knowledgeable about OCD and its treatments, and responded with kindness when the participant disclosed their condition.
Another participant’s confidence in mental health professionals stemmed from a family member’s positive experience with mental health treatment.
5. Driven to seek treatment because of the nature of the thoughts
Three participants with intrusive thoughts about harming children were driven to seek treatment due to their misinterpretation of these thoughts as indicating a real risk of harm.
Despite lengthy delays in two cases, they sought help to prevent the feared harm.
A fourth participant was compelled to disclose their OCD to a health professional for the first time due to intrusive thoughts related to scrupulosity, triggered by an occupational health form requiring disclosure of anxiety disorders and a strong need to be completely truthful.
Strengths
- In-depth individual interviews provided rich detail
- Researcher with personal experience of OCD informed methodology
- Barriers and enablers were identified
- Wide range of obsessions/compulsions and severity levels represented
Limitations
- Sample was self-selected volunteers, mostly White British
- Participants were contacted through one charity
- Retrospective self-report may not be fully accurate
- No formal evaluation of the impact of having a researcher with personal experience
These limitations mean caution is warranted in generalizing the findings to all people with OCD. The sample may not represent the full diversity of people with OCD.
Clinical Implications
The formidable barriers identified help explain the long delays in seeking treatment for OCD.
These findings highlight the importance of increasing public awareness and understanding of OCD and its symptoms, as this knowledge gap can significantly hinder individuals and their families from recognizing the need for professional help.
The results underscore the importance of individuals having trust and confidence in their healthcare providers when seeking help for OCD.
A healthcare professional’s knowledge, empathy, and ability to create a safe environment can be crucial factors in facilitating successful help-seeking experiences.
References
Primary reference
Robinson, K. J., Rose, D., & Salkovskis, P. M. (2017). Seeking help for obsessive compulsive disorder (OCD): a qualitative study of the enablers and barriers conducted by a researcher with personal experience of OCD. Psychology and Psychotherapy: Theory, Research and Practice, 90(2), 193-211.
Other references
Belloch, A., del 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.
Pinto, A., Mancebo, M. C., Eisen, J. L., Pagano, M. E., & Rasmussen, S. A. (2006). The Brown Longitudinal Obsessive Compulsive Study: Clinical features and symptoms of the sample at intake. Journal of Clinical Psychiatry, 67(5), 703–711.
Robinson, K. J., Rose, D., & Salkovskis, P. M. (2017). Seeking help for obsessive compulsive disorder (OCD): a qualitative study of the enablers and barriers conducted by a researcher with personal experience of OCD. Psychology and Psychotherapy: Theory, Research and Practice, 90(2), 193-211.
Keep Learning
- How might stigma prevent someone with OCD from telling others about their struggles or seeking help? What could be done to reduce this stigma?
- Many participants said they felt their OCD “wasn’t bad enough” to seek treatment, even when it was severely impacting their lives. Why do you think they set such a high threshold? What are the dangers of this way of thinking?
- Personal accounts of OCD in media inspired some participants to seek help. How could we amplify the voices of people sharing their OCD stories? What must be considered in doing so?
- Several barriers seem to stem from lack of knowledge about OCD (not knowing what it is, worries the GP won’t understand). Whose responsibility is it to improve public and professional understanding of OCD? What are some ways to do this?
- For those with taboo intrusive thoughts, like harming children, fear of being “criminalized” was a major barrier. How can we create safe spaces for sufferers to disclose these distressing thoughts without fear? What training do professionals need to handle these disclosures appropriately?
