Research Article: Illness perceptions in people with obsessive-compulsive disorder; A qualitative study

Date Published: March 20, 2019

Publisher: Public Library of Science

Author(s): Rebecca Pedley, Penny Bee, Alison Wearden, Katherine Berry, Hedwig Eisenbarth.


Obsessive-compulsive disorder (OCD) is a serious mental health problem that causes significant impairment and reduced quality of life. Though some substantially benefit from psychological therapies, a substantial proportion of people with OCD disengage from treatment or fail to benefit. Theoretical models such as the Common-Sense Model posit that our management of physical illness depends on our perceptions about the condition. Identifying how people with OCD perceive their condition could lead to important insight that would improve treatment of OCD.

To identify and characterise the illness perceptions of people with OCD.

Transcribed semi-structured interviews exploring the illness perceptions of 16 people with OCD were analysed using thematic analysis.

In some cases, identification of symptoms was hindered by a failure to interpret experiences as ‘symptoms’. Instead, these individuals interpreted symptoms as a personality quirk, or as evidence that they had become deviant. Perceptions of the condition as ‘part’ of the self contributed to views of OCD as permanent. Individuals were concerned about the impact of OCD on friends and family and attempted to minimise its consequences, for example by concealing symptoms from their children, who they feared could acquire OCD.

Applying a theoretical model of physical health understanding to OCD yielded novel insights, with important implications for support and treatment. To enable early help-seeking and rapid diagnosis, public and professional knowledge about OCD should be extended beyond ‘washing and checking’ to the less widely known OCD-subtypes, such as fear of causing harm. It may be important to identify and challenge views of OCD as permanent early in the course of treatment to maximise engagement. Management of OCD should also address the burden of living with OCD in a family context. Further research to test whether these perceptions lead to coping responses and outcomes in OCD is now needed.

Partial Text

Obsessive-compulsive disorder (OCD) is a mental health condition that affects approximately 2% of the population in their lifetime [1, 2]. People living with OCD experience obsessions (recurring unwanted thoughts, images or impulses) and/or compulsions (repetitive physical behaviours, such as checking or mental acts) [3]. Individuals with OCD perform these acts to provide themselves with reassurance, to prevent a feared event and/or reduce their distress or anxiety [3]. People living with OCD can experience severe ‘role’ impairment [2] and reduced quality of life [4]. In the domain of social relationships, quality of life scores are lower than those observed in other mental or physical health problems [4].

The study received ethical approval from the NRES Committee North West—Lancaster (Ref: 13/NW/0506). All participants gave their informed written consent to take part in the study.

The flow of participants through the study is shown in in Fig 1. The characteristics of the sixteen interviewed participants are provided in Table 1. The mean Y-BOCS score of the included sample was 20.2 (7–29), indicating a ‘moderate’ level of OCD. Eleven participants reported an additional long-term physical or mental health condition, five of which suffered from more than one other condition. The most common of which was depression (n = 6), followed by anxiety (n = 3) and fibromyalgia (n = 2). All participants described their ethnicity as either White-British or White-Scottish.

This study aimed to identify and characterise the IPs of people with OCD. All dimensions of illness perception described in the CSM (and IPQ/IPQ-R) were evident within the data, suggesting that there are parallels in the way that people with physical illnesses and OCD perceive their conditions. As has been found for physical illnesses, participants held perceptions about the label and symptoms of their condition, their ability to control it, its causes and consequences, their emotional responses to the illness, the likely time course and the degree to which they had formed a coherent understanding of their condition. Despite all illness perception categories being evident in the data, there were however, differences in the way individuals perceived OCD compared to how individuals might perceive a physical illness. Inductive analysis revealed three novel aspects of illness perception which supplement the CSM dimensions, relating to how people see OCD as ‘part’ of them, the factors that influence the severity and shape the appearance of OCD (i.e. its sub-types), and a perception of the disorder presenting as a spectrum in the general population. The emergence of these three novel aspects suggests that in mental health conditions (specifically in OCD), there is an added layer of complexity in our understanding of ‘illness’. It is important to note however, that there is some conceptual overlap between the new themes presented and those within the CSM. For example, the proposed theme of the ‘reactivity’ of OCD could be deemed to add information to perceptions of the degree to which the illness severity fluctuates (timeline cyclical). What seems to be novel here is the importance that participants placed on the influences that were perceived to affect OCD severity and content. Perceptions of the nature of these influences appeared to be important, for instance, a belief about the possibility of ‘picking up’ additional OCD obsessions from others reducing an individual’s willingness to attend a support group. The ‘timeline’ sub-scales of widely used measures of illness perception, the IPQ-Q and IPQ-R, do not include any questions that capture perceptions of potential influences on the condition. Therefore, whilst there was indeed evidence that the existing dimensions of the CSM (and subsequently the IPQ-R) usefully capture sufferers’ perceptions of OCD, we would argue that the additional themes presented here contribute to a fuller picture of participants’ illness perceptions.




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