- Open Access
Living with obsessive-compulsive disorder (OCD): a South African narrative
© The Author(s) 2018
- Received: 14 July 2018
- Accepted: 24 November 2018
- Published: 1 December 2018
Obsessive–compulsive disorder (OCD) is a highly prevalent and debilitating psychiatric disorder known to interfere with several life domains. Yet little is known about the subjective experiences of living with OCD amongst South Africans and more so, the ways in which it impacts daily functioning and quality of life (QOL).
The aim of this study was to explore daily functioning and QOL among South African adults living with OCD. Qualitative semi-structured interviews were conducted with 20 adults with a primary diagnosis of OCD. We used ATLAS.ti v7 to analyse the data, thematically. The study was conducted at the SU/UCT MRC Unit on Risk and Resilience in Mental Disorders in South Africa.
Three key themes were identified namely, (1) realisation of OCD, (2) disruptions to daily life and (3) managing the disruptions to daily life. Participants recounted their earliest recollections of OCD, the instances when they recognised something was wrong and ways in which they came to terms with their OCD. Disruptions to daily life included poor sleep quality, inability to enjoy leisure activities which impacted on socialisation and impairment in school/work performance. Perceived social support from family members, friends and colleagues were invaluable to helping participants manage these disruptions. Further, strategies such as self-talk, diary-keeping and humour helped them cope.
While some individuals with OCD have found ways to cope with and accept having OCD, all participants perceived their QOL to be significantly reduced and their functioning impaired due to the condition, on multiple levels. The importance of acceptance in OCD ties in with research on the potential value of Acceptance and Commitment Therapy, which could form an adjunct to more conventional techniques such as Cognitive-Behavioural Therapy. The themes emanating from this study can be used to help clinicians better understand what treatment works best for patients with OCD—and whether this treatment be focused on the individual or together with close members of their microsystem, such as spouses/partners. Further these findings may potentially help to improve access, affordability and the quality of life of South Africans living with OCD from various income backgrounds.
- Obsessive–compulsive disorder
- Daily functioning
- Quality of life
- Thematic analysis
Obsessive–compulsive disorder (OCD), a highly prevalent psychiatric condition, is recognised as one of the 10 most disabling conditions given its impact on functioning and quality of life (QOL) [1, 2]. OCD is characterized by recurrent and intrusive thoughts and images (obsessions) and/or repetitive behaviours (known as compulsions) .
There is a substantial body of quantitative evidence to suggest that OCD has a large negative influence on the daily activities and QOL of individuals living with the disorder [4–9]. However, there are some discrepancies in findings on the ways OCD affects life. For example, amongst an Indian OCD sample, the psychological and social domains of QOL were more affected than other domains . In contrast, evidence from a South African sample of OCD patients suggested impairment in family functioning but not in other domains .
Qualitative studies offer a way in which these discrepancies may potentially be addressed, providing additional insights into how individuals experience disruptions in the various domains of functioning due to OCD. Improvements in understanding may ultimately lead to better management of these patients [10–16]. For example, some insights into the experiences of OCD are seen in a qualitative study from India . In this study participants articulated that their obsessions and compulsions often made it difficult to maintain a connection with others which limited their access to emotional support and often lead to feelings of hopelessness and powerlessness, and impacted on self-esteem [10, 11, 13, 14, 17]. Findings such as these begin to provide deeper insights into individuals’ experiences of the impact of OCD on their lives.
At the time of this writing, no publications on qualitative studies on OCD amongst South African individuals were available. Locally, studies on OCD that are available have mainly focused on the functional impairment aspects of OCD, quantitatively [8, 18–20]. The OCD symptom profile may look similar amongst individuals living with the disorder globally; however, it may be that the broader social, political and economic factors influence and shape the perceived experience of the condition differently amongst those living in resource-limited and thus vulnerable settings like South Africa. Accordingly, in this study, we used qualitative methods to explore the experiences of and ways in which OCD influences the daily life and functioning of South African adults living with OCD.
Globally, mental health researchers increasingly value the importance of exploring mental health holistically, through biological, psychological and sociocultural perspectives . Much mental health research has been orientated towards understanding the individual, often through a biomedical lens, with little focus on the influences of the broader context within which the individual lives and how this may impact on functioning . For example, various individual models exists to understand OCD [12, 22–24]. More recent models of OCD—which go beyond the better known cognitive models of OCD [25, 26], is the inference-based approach (IBA) and the autogenous-reactive model (AR). The IBA is a cognitive model of OCD [22, 23] which posits that an individual’s fear of the self is core to various obsessions experienced. Further, the AR model of OCD  posits that an individual’s obsessions are triggered either internally (within the individual—e.g. through memories) or externally (i.e. triggered by external stimuli—e.g. accidents/fires) .
In this study, we were interested in going beyond individual factors associated with OCD and exploring the ways in which OCD impacts various life domains where interpersonal relationships are key. To this end, we used concepts associated with Ecological Systems Theory (EST), as laid out by Bronfenbrenner [27, 28] to guide explanations of the influence of OCD on daily functioning. In keeping with EST, the individual functions within a system of nested environments, and each of these environments is connected to one another in a bi-directional way. As such, these systems function together to affect an individual’s development such as their relationships, emotions, behaviour, and general functioning. In EST these systems include (1) the microsystem—i.e. the relationship between the individual and those within their immediate environments such as members of their family and work colleagues; (2) the mesosystem—which refers to the interrelations between two or more microsystems surrounding the individual such as the relationship between the individual’s family and workplace, and family and peers; (3) the exo system—i.e. the link between two or more systems with whom the individual has indirect interaction with, but has an effect on the individual such as workplace policies; (4) the macro system—i.e. the social factors that affect the individual’s life, such as the individual’s ideology, and (5) the chronosystem—which takes into account the changes in an individual’s life over time [27, 29]. Our study is predominantly concerned with the microsystem of the individual’s life. As such, we present findings on the impact of OCD on the individual and his/her immediate interpersonal relationships in multiple settings.
We used an exploratory qualitative research design and gathered data from individuals with a primary diagnosis of OCD using both qualitative and quantitative data collection methods. OCD was diagnosed using the Structured Clinical Interview for DSM disorders—SCID-I/P .
The present study was conducted at the Medical Research Council’s (MRC) Unit on Risk and Resilience in Mental Disorders. This is a cross-university research unit located at the Department of Psychiatry at Stellenbosch University (SU) and the Department of Psychiatry and Mental Health at the University of Cape Town (UCT), South Africa. This unit follows in the footsteps of the MRC Unit on Anxiety and Stress Disorders that was initiated at SU in 1997. Both are known for work on psychiatric genetics, psychiatric brain imaging, basic neuroscience, and mental health promotion. Foci include work on animal models, on clinical research, and on public health aspects. This study was embedded in a larger quantitative study focused on the phenomenology as well as the pharmacological, neurological and genetic underpinnings of OCD that was initiated to better understand the cognitive-affective processes in adult OCD patients [31, 32]. The aims of the larger study (still ongoing) are to collect neuroimaging data (via structural and functional MRI), clinical data (via self-report and clinician administered questionnaires), and genetic data (obtained via blood samples), to enable South African researchers to make contributions to international OCD research consortia and stimulate the growth of disciplines and interdisciplinarity. In addition, it is aimed that this larger project renders new knowledge on genotype-interaction effects on key brain structures in OCD. Findings related to these aspects of the larger study are reported elsewhere [33–35]. The present study sought to expand on the quantitative data collected as part of the larger study by including patient perspectives on the impact of OCD in their everyday lives.
Participants and procedure
A subset of participants from the larger study were consecutively selected to receive an invitation via e-mail to be interviewed. Eligible participants were 18 years or older, with a primary diagnosis of OCD. Given that participants were recruited consecutively from the database of the larger study, no specific attempts were made to purposively recruit for gender or socioeconomic status. Recruitment of participants continued until no more new information emerged from the interviews, that is until we reached data saturation . The primary diagnosis of OCD was confirmed using DSM-IV criteria. Participants were interviewed face-to face if they responded to an email invitation confirming an interest in taking part. Interviews were conducted in either English or Afrikaans, in the participants’ first language, and guided by a semi-structured interview schedule that contained a series of open-ended questions. Interviews generally lasted between 30 and 60 min. These interviews were the first contact that the interviewer (KK) had with the participants. The themes covered in the interview were (1) his/her earliest recollection of OCD symptoms, (2) his/her daily activity experiences, and (3) the coping strategies that were used over time.
Participants completed a demographic questionnaire and the Florida Obsessive–Compulsive Inventory (FOCI)  to measure OCD symptom severity before the start of the interview. Score categories included, mild, moderate, severe, and extreme. Additionally, a clinician-administered scale, the Yale-Brown Obsessive Compulsive Scale (Y-BOCS) , was also used to assess OCD severity. Score categories also included, mild, moderate, severe, and extreme. These two severity scales (FOCI and Y-BOCS) were included to provide a better understanding of the illness profile of the participants. Trustworthiness of the qualitative data was ensured by clarifying participant responses for meaning using paraphrasing techniques.
This study received approval as an amendment to the larger study by the Health Research Ethics Committee (HREC) at Stellenbosch University (M07/05/019). All participants gave written informed consent. Prior to signing the consent forms, participants were informed that participation in the present study was a once-off semi-structured interview. Participants were also informed that their participation was entirely voluntary and that they were free to withdraw from the study at any point without consequence. Further, participants were informed that they could refuse to answer any questions. Further, participants were assured that their information would be kept strictly confidential and only accessible to the student (KK), and her two supervisors (BJC & CL). Participants were informed that their data would be completely anonymized in any publications emanating from this work, and that the data will be stored securely on the password-protected computers of the student and her supervisors. Participants each received a travel voucher to reimburse them for the costs of their journey to and from the research unit.
Interviews were digitally recorded (with permission from the participants) and transcribed verbatim. The transcripts were thematically analysed (TA) using ATLAS.ti version 7, a computer supported qualitative data analysis software. Analysis of the transcripts followed a six stage approach to data analysis, i.e.: (1) familiarisation with the data, (2) coding relevant extracts of the data and generating an initial code list, (3) refining the codes and generating themes, (4) reviewing each theme generated in step 3, (5) refining, describing, and allocating descriptive labels to each theme, and (6) presenting the results of the data analysis . In qualitative research, themes can be generated either inductively (from the data alone), deductively (informed by theory), or via a combination of the two . In this study, we used a combination of the two methods. As such, EST provided a useful lens through which to interpret the inductively generated themes across the various systems in which the individual functions . Pseudonyms have been used to protect participants’ identities.
n = 20
Age [mean (standard deviation) in years]
Live with other adult(s), no children
Live with other adults and children
Highest education level
Completed high school/matric
Attended university/college but did not graduate
Graduated from university/college
Current work situation
Employed full time
Employed part time
R15,001 and above
Overview of themes and sub-themes
Themes and sub-themes following thematic analysis
Realisation of OCD
Feeling more alike than different
Recognising something’s wrong
Coming to terms with OCD
Disruptions to daily life
Disruptions in sleep and rest
Disruptions to leisure activities and hobbies
Disruptions to productivity
Managing the disruptions to daily life
Perceived social support
Theme 1: Realisation of OCD
The theme ‘Realisation of OCD’ portrays participants’ journey with OCD, from their earliest recollections of their symptoms typical of the disorder, to some of the difficulties associated with coming to terms with OCD across their lifetime. Overall, this theme portrays the impact of OCD on the self.
Subtheme 1.1. Feeling more alike than different
I thought that it was normal to be this way because I have been this way since I was little (Sally, 62-year-old female).
My earliest memory was when I was bout eleven or twelve years old, I was in standard three. I only realised this later on in life but if I look back, my mother used to come into my room and say to me, why have you got so much homework, why are you spending so much time in your room? Meanwhile what I was doing was busy organising my stationery and my books and rearranging them, and packing them neatly, just, you know, doing these things over and over and over again and telling my mother I was busy with my homework. Meanwhile I wasn’t actually achieving much but that’s the first time I realised, well I didn’t realise at that age I had OCD but looking back I think that was the earliest time that I can remember having OCD (Angela, a 40-year-old female).
Subtheme 1.2. Recognising something’s wrong
I think my mom recognized ‘oh goodness, there is something wrong with this child!’ Yes, she took me to various doctors… and I got diagnosed quite quickly (Rezaan, a 23-year-old female).
My children told me that it’s not nice to come and visit me. I could not sit still, I still cannot sit still! […]. And worst of all, I did not realise that it was abnormal (Lucia, a 55-year-old female).
Subtheme 1.3. Coming to terms with OCD
… I’ve had enough of it, like I’ve been dealing with it since junior school and I hate my thoughts, I hate my little tics, so some days maybe a teensy bit satisfied but overall I’m not satisfied, no (Kelsey, a 31-year-old female).
I’m angry, I’m disappointed and I’m sad that I had to have gone through it but what can one do. One can’t go back in time, one can’t …but yes it is sad. It’s sad that I can’t have happy memories of overseas trips, it’s sad that I can’t have happy memories of school, it’s sad that I can’t have happy memories of varsity, it’s sad that I can’t have happy memories of my first working life (Stuart, a 47-year-old male).
I’ve learned to accept myself and I’ve learned to focus on the things on my, you know my…positive things, the good things. So and I started dressing in a way that I feel more comfortable and in developing a style that I like (Derrick, a 58-year-old male).
So it’s definitely gotten a lot better I just don’t think it will ever go away you know, and I think I’ve accepted that (Sasha, a 37-year-old female).
Theme 2: Disruptions to daily life
The theme ‘Disruptions to daily life’ provides an account of the important disruptions that took place in participants’ lives due to OCD. These include the impact of OCD on activities of daily living such as sleep, work and leisure, as well as the ability to establish and maintain interpersonal relationships with key members of the individual’s microsystem.
Subtheme 2.1. Disruption to sleep and rest
Participants reported that the persistent nature of their intrusive thoughts (obsessions) and the resulting anxiety lead to difficulties sleeping and resting. Participants’ lack of sleep meant that they were tired often, and not emotionally or physically available for active engagement with their family and friends.
I couldn’t switch off, I would go a whole night worrying about the same thing and tomorrow morning wake up if I slept. Some nights I wouldn’t sleep and not worry about the same thing (Rheinart, a 55-year-old male).
I missed a lot of sleep, because my ritual before going to bed was obviously in the bathroom, and I would be in the bathroom doing my ritual over and over and over until I was sobbing on the floor in tiredness (Wendy, a 26-year-old female).
Subtheme 2.2. Disruption to leisure activities and hobbies
…myself and a friend of mine last year we went and did a trip up to the Northern Cape and down the West Coast just taking photos of cemeteries, and he would’ve wanted to go for probably maybe 2 weeks, and I said no 4 days. I can’t be away from my house longer than 4 days. So he had to change that trip to 4 days because that was already the limit of me being away from the house… that the house is not being checked (Marcy, a 59-year-old female).
It’s hard for me to relax, my mind doesn’t stop, my mind is in constant worry, in anticipation of bad things. Obviously yes, there are times when I can go out with some friends and my mind will be there, but a lot of the time it interferes with me trying to relax. Always on the edge of worrying about saying something wrong, or obsessing about something or whatever (Wendy, a 26-year-old female).
Subtheme 2.3. Disruptions to productivity
There are days that I’ve spent 8 hours at work and not been able to do a single stitch of work because of the routines that I’ve had to do with OCD, and get to work and you’ve gotta check your e-mails. Then all the e-mails have to be in bold and then you, and then some of them are unbolded and then no okay it must all be unbolded then you unbold them and they’ve gotta be colour-coded. Then they’ve gotta be this then they’ve gotta be that […] and so there’ve been days that I haven’t been able to do any work (Kelsey, a 31-year-old female).
At varsity I couldn’t function at all, because the only way it would make any sense for me is if I took down every single word including “a’s” and “the “s’s” and whatever that that lecturer said, and I took it down neatly that I could be proud of my notes and they were neatly and whatever. That was impossible at Varsity, so I just stopped going to lectures and I used to bum notes off my other people and whatever (Rezaan, a 23-year-old female).
I think I did better than I would otherwise have done, because I pushed myself so much, I was my own biggest competition. It made me perform better (Judy, a 33-year-old female).
Theme 3: Managing the disruptions to daily life
The theme ‘Managing the disruptions to daily life’ provides an account of the sources of support and the coping strategies that were implemented to deal with the impact of OCD.
Subtheme 3.1. Coping strategies
I’m good now at telling myself to just stop, just put it down just stop because this is not fun anymore uhm (Sasha, a 37-year-old female).
So I learned a lot of methods to write it down and it also works to read it to yourself over and over and over and over and over again until you realize how irrational it is (Judy, a 33-year-old female).
…And I put a rubber band on my arm/wrist and I shoot myself with dizziness if I get this stuff in my head… (Judy).
Subtheme 3.2. Perceived social support
…when I was diagnosed with OCD they were very supportive, very very supportive. In terms of financially supporting my therapy, financially supporting my education, and emotionally supporting me etc. (Stuart).
I would ask my children…, they all drive- they (are) all big and I would ask them to ride to a specific corner and go and check if there is not a cyclist going there. In the end I think they might have done it once or twice (Rheinart, a 55-year-old male).
…For example, a story like Dr. Monk, who is obsessive–compulsive, then I always said to them, “I’m Mr. Monk, “then they laugh, then they click and say,” Yes, yes, now we know exactly why you were like that… (Sandra, a 39-year-old female).
You know I’ve explained to him […]I don’t think he understands why I get so anxious or why I, if I just cry, what it, he doesn’t see what’s going on in my head. Sometimes what’s going on in my head is so so much, that when you tell someone, that’s not much, you know but in your head it’s too big, so it’s very difficult to explain. […] I’m just saying that the level is different and yes he doesn’t always understand but he’s still there. Yes, he’s still there (Wendy, a 26-year-old female).
In this study we qualitatively explored the ways in which OCD influences the daily life and functioning of South African adults living with OCD. We used EST as a broad theoretical lens through which to identify the composition of participant’s ecological systems. Our findings provide a closer look at participants’ microsystems, that is—the impact of OCD on the individual over time, on everyday living and relationships with family, peers and colleagues. Further, our findings also provide an account of the strategies participants used to cope with OCD, and the sources of support that were available to them.
Our study is part of a growing body of qualitative literature on OCD using exploratory approaches to better understand the perspectives of individuals living with OCD [11–13, 15, 17]. In her paper, Knapton  argues that the majority of studies on OCD are quantitative in nature and that our understanding of OCD, “has largely come from participants’ judgments of pre-defined and inflexible statements rather than from extended and unrestricted descriptions”, and that this approach limits, “intra-participant variation” (p. 2). In the current study, the findings provide instances of consistent and contrasting accounts of the experience of OCD—highlighting the heterogeneity of the disorder, and the importance of exploring individual perspectives.
Our findings provided an account of participant’s realisation of having OCD. Our findings demonstrated that, initially (often reflecting back to childhood), individuals with OCD perceived their symptoms as normal, that they were similar to other people, and that their behaviours and thoughts were part of their personality. It was only when symptoms began to markedly disrupt daily life and functioning, in addition to causing major distress, that they realised that these were pathological or indicative of having a psychiatric problem, warranting a visit to the clinic. Notably, research suggests that individuals with OCD sometimes lack such insight into the excessiveness of their symptoms . Given that some individuals without OCD also experience OC-like symptoms, the behaviour is often interpreted as normal  or minimalized as “just a bad habit” that can easily be addressed. Family members and spouses in particular were key to helping participants recognise their symptoms as excessive. As shown in other research, participants’ compulsions i.e. externalised behaviour such as checking or washing, were key to recognition of the disorder . However, it has been shown that family members themselves often experience marked distress when observing compulsions associated with OCD . Interactions with significant others in the context of OCD was not necessarily perceived as positive though. For example, in their study of individuals living with OCD and their partners in Norway, Walseth et al. found that patients often reported feeling monitored and surveillanced by their partners . This seems to be an important area for therapeutic focus, to eliminate potentially persecutory actions by family members towards those with OCD, and to also help mitigate the frustration and disconnect individuals with OCD feel with family members who seemingly do not understand them or their OCD . Failure to address this may lead to avoidance of interaction by those with OCD and their partners and lead to performing behaviours in secrecy, and increasing what Walseth et al.  refer to as a ‘mental distance’.
Our findings also showcased the disruptions to daily life due to OCD. Similar to other studies [44, 45], our findings demonstrated OCD’s deep impact on sleep quality, leisure activities, and participants’ interpersonal relationships with friends and family. Participants in our study experienced difficulty preparing for sleep as thoughts and rituals had to be performed continuously. Evidence for sleep disruption due OCD is not consistent across studies, with some demonstrating difficulty sleeping and resulting exhaustion [46, 47], and others not . The findings that do suggest sleep disturbance also included references to difficulties in daily functioning, overall physical and mental health . For our participants, a lack of sleep and the associated consequences exacerbated their perceptions of their illness severity, ultimately affecting their ability to function daily . Leisure activities are found to benefit and assist mental illness in the process of recovery . However, consistent with other studies, participants found it difficult to engage in activities they enjoy, as many of these activities triggered symptoms of OCD. Moreover, engaging in leisure activities provide opportunities for socialisation. As such, withdrawal from these activities may ultimately also lead to isolation [45, 52].
Consistent with some quantitative [53, 54] and qualitative work [11, 13, 17], several participants commented on the impact of their OCD on attendance and performance at school/university, and/or work. In their study with nine British individuals living with OCD, the authors identified the theme of ‘Failing at life’ and described this as the overwhelming impact of the disorder on education and careers . Similar to participants in our study, these participants spoke of their goals and expectations being delayed or thwarted as a consequence of this disorder . Consequently, individuals with OCD may feel hopeless and powerless, because they cannot live up to particular expectations or potential, which impacts on their self-esteem . On the other hand, there is not much evidence for the positive impact that OCD may have on school and work as found in this study, despite two qualitative studies making slight mention of it [10, 13]. For example, echoing the words of one of our participants, the one study  reported how OCD enabled one of their participants to be thorough and good with detail.
Our findings also showcased the ways in which participants managed the disruptions due to OCD in their lives. Participants identified physical, emotional and financial support from significant others as crucial in managing and coping with their OCD. This finding is consistent with studies that have shown the positive impact of perceived social support on individuals’ ability to cope with the difficulties of OCD [55, 56]. Similar to our findings, some studies show that most family members of individuals living with OCD accommodate them in most respects—e.g. actively assisting the OC individual by participating in their rituals or doing chores for them in order to save time or reduce frustration [16, 57]. However, there also is strong evidence to suggest that family support and involvement may exacerbate dysfunctional behaviours [58, 59]. Whereas participants in our study explicitly stated an appreciation of this type of accommodation, and perceived it as a means of social support—studies show that this type of accommodation seems to interfere with a positive response to treatment [16, 60]. Furthermore, while participants were mostly positive about the support they received from their significant others, there were concerns about their illness as being burdensome and traumatic for the families [61, 62]. Arguably, these concerns may lead to avoidance of sharing and ultimately, to feeling isolated. This hypothesis is consistent with findings from a recent qualitative study where participants reported feeling disconnected from family and friends . As such, emotional responses towards family and friends may range from positive and appreciative to fears of being burdensome and withdrawal—highlighting that it is an important avenue for further research. Indeed, some literature suggests that involving family in treatment (e.g. partners, in couple-based therapy) may not be suitable for everyone . Furthermore, other studies have also demonstrated that familial responses to OCD vary, and in some instances may become a source of conflict that can contribute to even poorer relationship functioning, marital discord, and divorce [63–65]. The inability to maintain a meaningful connection with others limits patients’ access to emotional support and is likely to perpetuate feelings of hopelessness and helplessness [10, 11, 13, 14, 17].
Participants in the current study experienced OCD as disturbing, destructive, and debilitating, causing strong emotional reactions such as anxiety, irritation, anger, sadness, discomfort, and disgust. This ties in with diagnostic nomenclatures such as the DSM  and the ICD , which describes OCD as a condition characterised by intrusive thoughts and compulsions associated with significant distress. Feelings of anger, dissatisfaction, and hopelessness are also typical of patients with mental health problems such as OCD [13, 17, 67]. Our participants reported various ways of coping and adjusting to, and being flexible about the demands of their condition and its sequelae. Participants reported shifting from first attempting to solve OCD itself (problem-focused coping) to attempting to solve the emotions associated with their OCD (emotion-focused coping) . As participants shift from problem-focused coping to emotion-focused coping, they change their thoughts and the way they view their disorder and therefore move towards feelings of acceptance, i.e. accepting their condition and wanting to be accepted by others. This relative acceptance of an OCD diagnosis resonates with Relational Frame Theory (RFT) which forms the basis of Acceptance and Commitment Therapy (ACT) . ACT is an empirically-based psychological intervention that uses acceptance strategies mixed with commitment and behavior-change strategies, to increase psychological flexibility. There is a fair amount of research on ACT as a model and a treatment for OCD spectrum disorders . The acceptance/commitment concept leads us back to the present study’s first theme labelled “realisation of OCD”. As noted previously, whether participants accepted the diagnosis and its chronic nature or not, its impact on their daily lives is unmistakeable, and influences relationships significantly. It may be argued that if patients with OCD can learn to stop avoiding and denying their OC symptoms and accept the existence and the need for treatment thereof, they may be able to move forward in their lives. With this understanding, individuals may begin to accept their diagnosis and its sequelae, and commit to making the necessary changes in their behavior, regardless of what is going on in their lives.
This study has a few limitations. First, the sample size is relatively small but nevertheless comparable to other qualitative work. Second, interviews were once-off, thus providing little opportunity for rapport building between the interviewer and the interviewee. Follow-up interviews may have provided an opportunity for participants to feel sufficiently more comfortable to provide more in-depth information. Finally, we acknowledge that interviews with family members, friends and work colleagues may have afforded a more in-depth account of the bi-directionality of the impact of OCD on members of participant’s microsystem. Interviews with these key role players in participants’ lives will be an important avenue for further research to go beyond just identifying individual level factors to target in interventions.
In conclusion, this qualitative study of the lived experiences of adults with OCD identified 3 three main themes, centring on participants’ realisations of having OCD, the disruptions caused and the ways in which these were perceived and addressed. Our findings were consistent with those from quantitative studies, but provides added depth that may assist in the care of these patients. For example, in the current study the findings provide instances of consistent and contrasting accounts of the experience of OCD—highlighting the heterogeneity of the disorder, and the importance of exploring individual perspectives. The involvement of the family and significant others in the patient’s symptoms and treatment was also addressed; the findings here have emphasized that these relationships are dynamic and may not necessarily be constructive, warranting special attention and adjustment during therapy. A discussion of management and coping with OCD emphasized the importance of acceptance. This ties in with recent work on the potential value of ACT, either as monotherapy or as an adjunct to conventional techniques such as Cognitive Behavioural Therapy (CBT). Many caveats in our knowledge remain. For example, whether the South African experiences of living with OCD are significantly different from other contexts, is not yet known. Also, how local challenges—e.g. limited accessibility, affordability and specialization—shape experiences of South Africans with OCD, is another potential research avenue to be explored.
KCK: Conceptualisation of idea, data collection and analysis, preparation of full first draft of manuscript. These data were collected as part of Ms. Kohlers master’s thesis in research at Stellenbosch University, under the supervision of BC and CL. BC: Conceptualisation of research question, assisting with data analysis, contributing to writing of manuscript. CL: Conceptualisation of research question, assisting with recruitment and data collection, assisting with data analysis, contributing to writing of manuscript. All authors read and approved the final manuscript.
We are grateful for the contributions and time of the individuals with OCD who agreed to participate and share their stories. We would like to acknowledge those who assisted with data collection, transcription and translation.
The authors declare that they have no competing interests.
Availability of data and materials
Due to ethical concerns and participant’s links to a larger ongoing study, the data are not openly available.
Consent for publication
All participants provided written informed consent for publication.
Ethics approval and consent to participate
This study received approval from the Health Research Ethics Committee (HREC) at Stellenbosch University (M07/05/019). All participants provided written informed consent.
Ms. Kirsten Kohler received funding from the National Research Foundation (SFH160609169643). Opinions expressed and conclusions arrived at, are those of the authors and are not necessarily to be attributed to the NRF.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
- Bobes J, González MP, Bascarán MT, Arango C, Sáiz PA, Bousoño M. Quality of life and disability in patients with obsessive–compulsive disorder. Eur Psychiatry. 2001;16:239–45.View ArticlePubMedGoogle Scholar
- Veale D, Roberts A. Obsessive–compulsive disorder. BMJ. 2014;348:g2183. https://doi.org/10.1136/bmj.g2183.View ArticlePubMedGoogle Scholar
- American Psychiatric Association. Diagnostic and statistical manual of mental disorders (DSM-5®). 5th ed. Arlington: American Psychiatric Association; 2013.View ArticleGoogle Scholar
- Coluccia A, Fagiolini A, Ferretti F, Pozza A, Goracci A. Obsessive–Compulsive Disorder and quality of life outcomes: protocol for a systematic review and meta-analysis of cross-sectional case–control studies. Epidemiol Biostat Public Heal. 2015;12:1–7. https://doi.org/10.2427/11037.View ArticleGoogle Scholar
- Coles ME, Heimberg RG, Frost RO, Steketee G. Not just right experiences and obsessive–compulsive features: experimental and self-monitoring perspectives. Behav Res Ther. 2005;43:153–67. https://doi.org/10.1016/j.brat.2004.01.002.View ArticlePubMedGoogle Scholar
- Gururaj GP, Math SB, Reddy JYC, Chandrashekar CR. Family burden, quality of life and disability in obsessive compulsive disorder: an Indian perspective. J Postgrad Med. 2008;54:91–7.View ArticlePubMedGoogle Scholar
- Hou S-Y, Yen C-F, Huang M-F, Wang P-W, Yeh Y-C. Quality of life and its correlates in patients with obsessive–compulsive disorder. Kaohsiung J Med Sci. 2010;26:397–407. https://doi.org/10.1016/S1607-551X(10)70065-6.View ArticlePubMedGoogle Scholar
- Lochner C, Mogotsi M, Toit P du. Quality of life in anxiety disorders: a comparison of obsessive–compulsive disorder, social anxiety disorder, and panic disorder. 2003. http://www.karger.com/Article/FullText/73451. Accessed 19 Jan 2016.
- Vasudev RGN, Yallappa SC, Saya GK. Assessment of quality of life (QOL) in obsessive compulsive disorder (OCD) and dysthymic disorder (DD): a comparative study. J Clin Diagn Res. 2015;9:VC04–7. https://doi.org/10.7860/jcdr/2015/8546.5974.View ArticlePubMedPubMed CentralGoogle Scholar
- Fennell D, Liberato ASQ. Learning to Live with OCD: labeling, the self, and stigma. Deviant Behav. 2007;28:305–31. https://doi.org/10.1080/01639620701233274.View ArticleGoogle Scholar
- Knapton O. Experiences of obsessive–compulsive disorder. Qual Health Res. 2016;26:2009–23. https://doi.org/10.1177/1049732315601666.View ArticlePubMedGoogle Scholar
- Knapton O. The linguistic construction of the self in narratives of obsessive–compulsive disorder. Qual Res Psychol. 2018. https://doi.org/10.1080/14780887.2018.1499834.View ArticleGoogle Scholar
- Murphy H, Perera-Delcourt R. ‘Learning to live with OCD is a little mantra I often repeat’: understanding the lived experience of obsessive–compulsive disorder (OCD) in the contemporary therapeutic context. Psychol Psychother Theory Res Pract. 2014;87:111–25. https://doi.org/10.1111/j.2044-8341.2012.02076.x.View ArticleGoogle Scholar
- O’Neill SA. Living with obsessive–compulsive disorder: a case study of a woman’s construction of self. Couns Psychol Q. 1999;12:73–86. https://doi.org/10.1080/09515079908254079.View ArticleGoogle Scholar
- Van Schalkwyk GI, Bhalla IP, Griepp M, Kelmendi B, Davidson L, Pittenger C. Toward understanding the heterogeneity in obsessive–compulsive disorder: evidence from narratives in adult patients. Aust N Z J Psychiatry. 2016;50:74–81. https://doi.org/10.1177/0004867415579919.View ArticlePubMedGoogle Scholar
- Walseth LT, Haaland VØ, Launes G, Himle J, Håland ÅT. Obsessive–compulsive disorder’s impact on partner relationships: a qualitative study. J Fam Psychother. 2017;28:205–21. https://doi.org/10.1080/08975353.2017.1291239.View ArticleGoogle Scholar
- Bhattacharya A, Singh A. Experiences of individuals suffering from obsessive compulsive disorder: a qualitative study. Qual Rep. 2015. http://search.proquest.com/openview/ba39ff06d3b2e452aa94c9a2299f5bc3/1?pq-origsite=gscholar. Accessed 4 Feb 2016.
- Hoppe L. Functional impairment in South African children and adolescents with obsessive–compulsive disorder. University of Cape Town; 2009. https://open.uct.ac.za/handle/11427/8929.
- Stein DJ, Roberts M, Hollander E, Rowland C, Serebro P. Quality of life and pharmaco-economic aspects of obsessive–compulsive disorder. A South African survey. S Afr Med J. 1996;86(12 Suppl):1582–5.Google Scholar
- Stein DJ, Wessels C, Zungu-Dirwayi N, Berk M, Wilson Z. Value and effectiveness of consumer advocacy groups: a survey of the anxiety disorders support group in South Africa. Depress Anxiety. 2001;13:105–7.View ArticlePubMedGoogle Scholar
- Eriksson M, Ghazinour M, Hammarström A. Different uses of Bronfenbrenner’s ecological theory in public mental health research: what is their value for guiding public mental health policy and practice? Soc Theory Health. 2018;16:414–33. https://doi.org/10.1057/s41285-018-0065-6.View ArticleGoogle Scholar
- O’Connor K. Intrusions and inferences in obsessive compulsive disorder. Clinial Psychol Psychother. 2002;9:30–46.Google Scholar
- O’Connor K, Aardema F. Clinician’s handbook for obsessive–compulsive disorder Inference-based therapy. Chichester: Wiley; 2011.View ArticleGoogle Scholar
- Lee H-J, Kwon S-M. Two different types of obsession: autogenous obsessions and reactive obsessions. Behav Res Ther. 2003;41:11–29.View ArticlePubMedGoogle Scholar
- Salkovskis PM. Obsessional-compulsive problems: a cognitive-behavioural analysis. Behav Res Ther. 1985;23:571–83.View ArticlePubMedGoogle Scholar
- Salkovskis PM. Cognitive-behavioural factors and the persistence of intrusive thoughts in obsessional problems. Behav Res Ther. 1989;27:677–82 (discussion 683-4).View ArticlePubMedGoogle Scholar
- Bronfenbrenner U. Making human beings human bioecological perspectives on human development. Thousand Oaks: SAGE Publications, Inc.; 2005.Google Scholar
- Bronfenbrenner U. The ecology of human development: experiments by nature and design. Cambridge: Harvard University Press; 1979.Google Scholar
- Visser MJ. The social ecological model as theoretical framework in community psychology. Community psychology: analysis, context and action. Cape Town: University of Cape Town Press; 2007. p. 102–33.Google Scholar
- First MB. Structured clinical interview for DSM-IV axis I disorders : patient edition (February 1996 final), SCID-I/P. New York, N.Y.: Biometrics Research Dept., New York State Psychiatric Institute; 1998.Google Scholar
- Lochner C, Serebro P. Comorbid obsessive–compulsive personality disorder in obsessive–compulsive disorder (OCD): a marker of severity. Prog Neuro. 2011. http://www.sciencedirect.com/science/article/pii/S027858461100087X. Accessed 19 Jan 2016.
- Lochner C, Simmons C, Kidd M, Chamberlain SR, Fineberg NA, van Honk J, et al. Differential effects of escitalopram challenge on disgust processing in obsessive–compulsive disorder. Behav Brain Res. 2012;226:274–80. https://doi.org/10.1016/j.bbr.2011.09.029.View ArticlePubMedGoogle Scholar
- Lochner C, Fouche J-P, Du Plessis S, Spottiswoode B, Seedat S, Fineberg N, Chamberlain SR, Stein DJ. Evidence for fractional anisotropy and mean diffusivity white matter abnormalities in the internal capsule and cingulum of patients with obsessive-compulsive disorder. J Psychiatry Neurosci. 2012;37(3):193–9.View ArticlePubMedPubMed CentralGoogle Scholar
- Lochner C, McGregor N, Hemmings S, Harvey BH, Breet E, Swanevelder S, et al. Symmetry symptoms in obsessive–compulsive disorder: clinical and genetic correlates. Rev Bras Psiquiatr. 2016;38:17–23. https://doi.org/10.1590/1516-4446-2014-1619.View ArticlePubMedGoogle Scholar
- McGregor NW, Lochner C, Stein DJ, Hemmings SMJ. Polymorphisms within the neuronal cadherin (CDH2) gene are associated with obsessive–compulsive disorder (OCD) in a South African cohort. Metab Brain Dis. 2016;31:191–6. https://doi.org/10.1007/s11011-015-9693-x.View ArticlePubMedGoogle Scholar
- Hennink MM, Kaiser BN, Marconi VC. Code saturation versus meaning saturation. Qual Health Res. 2017;27:591–608. https://doi.org/10.1177/1049732316665344.View ArticlePubMedGoogle Scholar
- Storch EA, Bagner D, Merlo LJ, Shapira NA, Geffken GR, Murphy TK, et al. Florida obsessive–compulsive inventory: development, reliability, and validity. J Clin Psychol. 2007;63:851–9. https://doi.org/10.1002/jclp.20382.View ArticlePubMedGoogle Scholar
- Goodman WK, Price LH, Rasmussen SA, Mazure C, Fleischmann RL, Hill CL, et al. The yale-brown obsessive compulsive scale. I. Development, use, and reliability. Arch Gen Psychiatry. 1989;46:1006–11.View ArticlePubMedGoogle Scholar
- Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101. https://doi.org/10.1191/1478088706qp063oa.View ArticleGoogle Scholar
- Ryan GW, Bernard HR. Techniques to identify themes. Field Methods. 2003;15:85–109. https://doi.org/10.1177/1525822X02239569.View ArticleGoogle Scholar
- Onwuegbuzie AJ, Collins KMT, Frels RK. FOREWORD: using Bronfenbrenner’s ecological systems theory to frame quantitative, qualitative, and mixed research. Int J Mult Res Approaches. 2013;7:2–8. https://doi.org/10.5172/mra.2013.7.1.2.View ArticleGoogle Scholar
- Beşiroğlu L, Ağargün MY. The correlates of healthcare seeking behavior in obsessive–compulsive disorder: a multidimensional approach. Turk Psikiyatri Derg. 2006;17:213–22.PubMedGoogle Scholar
- Abramowitz JS, Huppert JD, Cohen AB, Tolin DF, Cahill SP. Religious obsessions and compulsions in a non-clinical sample: the Penn Inventory of Scrupulosity (PIOS). Behav Res Ther. 2002;40:825–38.View ArticlePubMedGoogle Scholar
- Storch EA, Ledley DR, Lewin AB, Murphy TK, Johns NB, Goodman WK, et al. Peer Victimization in Children With Obsessive–compulsive disorder: relations with symptoms of psychopathology. J Clin Child Adolesc Psychol. 2006;35:446–55. https://doi.org/10.1207/s15374424jccp3503_10.View ArticlePubMedGoogle Scholar
- Stengler-Wenzke K, Kroll M, Riedel-Heller S, Matschinger H, Angermeyer MC. Quality of life in obsessive–compulsive disorder: the different impact of obsessions and compulsions. Psychopathology. 2007;40:282–9. https://doi.org/10.1159/000104744.View ArticlePubMedGoogle Scholar
- Paterson JL, Reynolds AC, Ferguson SA, Dawson D. Sleep and obsessive–compulsive disorder (OCD). Sleep Med Rev. 2013;17:465–74. https://doi.org/10.1016/j.smrv.2012.12.002.View ArticlePubMedGoogle Scholar
- Storch EA, Murphy TK, Lack CW, Geffken GR, Jacob ML, Goodman WK. Sleep-related problems in pediatric obsessive–compulsive disorder. J Anxiety Disord. 2008;22:877–85. https://doi.org/10.1016/j.janxdis.2007.09.003.View ArticlePubMedGoogle Scholar
- Arriaga F, Lara E, Matos-Pires A, Cavaglia F, Bastos L. Diagnostic relevance of sleep complaints in anxiety and mood disorders. Eur Psychiatry. 1995;10:386–90. https://doi.org/10.1016/0924-9338(96)80343-9.View ArticlePubMedGoogle Scholar
- Strine TW, Chapman DP. Associations of frequent sleep insufficiency with health-related quality of life and health behaviors. Sleep Med. 2005;6:23–7. https://doi.org/10.1016/j.sleep.2004.06.003.View ArticlePubMedGoogle Scholar
- Coles ME, Sharkey KM. Compulsion or chronobiology? A case of severe obsessive–compulsive disorder treated with cognitive-behavioral therapy augmented with chronotherapy. J Clin Sleep Med. 2011;7:307–9. https://doi.org/10.5664/JCSM.1080.View ArticlePubMedPubMed CentralGoogle Scholar
- Swarbrick M, Brice GH. Sharing the message of hope, wellness, and recovery with consumers psychiatric hospitals. Am J Psychiatr Rehabil. 2006;9:101–9. https://doi.org/10.1080/15487760600876196.View ArticleGoogle Scholar
- Langley AK, Bergman RL, McCracken J, Piacentini JC. Impairment in childhood anxiety disorders: preliminary examination of the child anxiety impact scale-parent version. J Child Adolesc Psychopharmacol. 2004;14:105–14. https://doi.org/10.1089/104454604773840544.View ArticlePubMedGoogle Scholar
- Neal-Barnett A, Mendelson LL. Obsessive compulsive disorder in the workplace. Women Ther. 2003;26:169–78. https://doi.org/10.1300/J015v26n01_11.View ArticleGoogle Scholar
- Tompkins MA. OCD: a guide for the newly diagnosed. Oakland: New Harbinger Publications; 2012.Google Scholar
- Palardy V, El-Baalbaki G, Fredette C, Rizkallah E, Guay S. Social support and symptom severity among patients with obsessive–compulsive disorder or panic disorder with agoraphobia: a systematic review. Eur J Psychol. 2018;14:254–86. https://doi.org/10.5964/ejop.v14i1.1252.View ArticlePubMedPubMed CentralGoogle Scholar
- Thompson-Hollands J, Edson A, Tompson MC, Comer JS. Family involvement in the psychological treatment of obsessive–compulsive disorder: a meta-analysis. J Fam Psychol. 2014;28:287–98. https://doi.org/10.1037/a0036709.View ArticlePubMedPubMed CentralGoogle Scholar
- Lebowitz ER, Panza KE, Su J, Bloch MH. Family accommodation in obsessive–compulsive disorder. Expert Rev Neurother. 2012;12:229–38. https://doi.org/10.1586/ern.11.200.View ArticlePubMedPubMed CentralGoogle Scholar
- Amir N, Freshman M, Foa EB. Family distress and involvement in relatives of obsessive–compulsive disorder patients. J Anxiety Disord. 2000;14:209–17. https://doi.org/10.1016/S0887-6185(99)00032-8.View ArticlePubMedGoogle Scholar
- Renshaw KD, Steketee G, Chambless DL. Involving family members in the treatment of OCD. Cogn Behav Ther. 2005;34:164–75. https://doi.org/10.1080/16506070510043732.View ArticlePubMedGoogle Scholar
- Garcia AM, Sapyta JJ, Moore PS, Freeman JB, Franklin ME, March JS, et al. Predictors and moderators of treatment outcome in the pediatric obsessive compulsive treatment study (POTS I). J Am Acad Child Adolesc Psychiatry. 2010;49:1024–33. https://doi.org/10.1016/j.jaac.2010.06.013.View ArticlePubMedPubMed CentralGoogle Scholar
- Piacentini J, Langley AK. Cognitive-behavioral therapy for children who have obsessive–compulsive disorder. J Clin Psychol. 2004;60:1181–94. https://doi.org/10.1002/jclp.20082.View ArticlePubMedGoogle Scholar
- Stengler-Wenzke K, Trosbach J, Dietrich S, Angermeyer MC. Coping strategies used by the relatives of people with obsessive–compulsive disorder. J Adv Nurs. 2004;48:35–42. https://doi.org/10.1111/j.1365-2648.2004.03166.x.View ArticlePubMedGoogle Scholar
- Boeding SE, Paprocki CM, Baucom DH, Abramowitz JS, Wheaton MG, Fabricant LE, et al. Let me check that for you: symptom accommodation in romantic partners of adults with Obsessive–compulsive Disorder. Behav Res Ther. 2013;51:316–22. https://doi.org/10.1016/j.brat.2013.03.002.View ArticlePubMedGoogle Scholar
- Riggs DS, Hiss H, Foa EB. Marital distress and the treatment of obsessive compulsive disorder. Behav Ther. 1992;23:585–97. https://doi.org/10.1016/S0005-7894(05)80223-0.View ArticleGoogle Scholar
- Subramaniam M, Abdin E, Vaingankar JA, Chong SA. Obsessive–compulsive disorder: prevalence, correlates, help-seeking and quality of life in a multiracial Asian population. Soc Psychiatry Psychiatr Epidemiol. 2012;47:2035–43. https://doi.org/10.1007/s00127-012-0507-8.View ArticlePubMedGoogle Scholar
- World Health Organization. The ICD-10 classification of mental and behavioural disorders: clinical descriptions and diagnostic guidelines. Geneva: WHO; 2016. http://apps.who.int/classifications/icd10/browse/2016/en.
- Carroll A, Pantelis C, Harvey C. Insight and hopelessness in forensic patients with schizophrenia. Aust N Z J Psychiatry. 2004;38:169–73. https://doi.org/10.1080/j.1440-1614.2004.01315.x.View ArticlePubMedGoogle Scholar
- Lazarus RS, Folkman S. Stress, appraisal, and coping. New York: Springer International Publishing; 1984.Google Scholar
- Hayes SC, Barnes-Holmes D, Roche B. Relational frame theory. Boston: Kluwer Academic Publishers; 2002. https://doi.org/10.1007/b108413.
- Bluett EJ, Homan KJ, Morrison KL, Levin ME, Twohig MP. Acceptance and commitment therapy for anxiety and OCD spectrum disorders: an empirical review. J Anxiety Disord. 2014;28:612–24. https://doi.org/10.1016/j.janxdis.2014.06.008.View ArticlePubMedGoogle Scholar