The participants, aged 10 to 17 years, included four girls and six boys, with eight attending regular school, one training in pre-vocational skills, and one pursuing open schooling; the onset age ranged from 9.5 to 13 years (mean 11, SD 1.2), and the diagnosis age ranged from 10 to 14.5 years (mean 12.4, SD 1.9). Four participants were from upper socioeconomic status, four from upper-middle, and two from lower-middle. Eight participants were Hindu, and two were Christian. The clinicodemographic profile of the sample is presented in detail in the primary manuscript on lived experiences (Sravanti et al., 2022).
The interviews ranged from a minimum of 1 hour 4 minutes to a maximum of 2 hours 47 minutes. Average duration of interviews was 1 hour 49 minutes. The number of sessions and total duration per participant is summarized in the table underneath (Table 2).
Table 2
Number of sessions and duration of interviews
Serial No. | Participant | Number of sessions | Total duration of interview (min) |
1. | P1 | 2 | 128 |
2. | P2 | 2 | 167 |
3. | P3 | 2 | 105 |
4. | P4 | 1 | 93 |
5. | P5 | 1 | 72 |
6. | P6 | 2 | 110 |
7. | P7 | 2 | 130 |
8. | P8 | 1 | 72 |
9. | P9 | 1 | 64 |
10. | P10 | 1 | 149 |
Insert Table 2
In addition to understanding the child behind the illness and how he/she experienced the journey of OCD, we also intended to understand their recovery process. Initially the major theme of ‘recovery as a process’ will be elaborated. Further, the barriers and facilitators to recovery derived by thematic analysis are detailed, each sub-theme validated with at least three significant statements.
Recovery as a process
Generally, recovery was perceived as a ‘process’ by the participants, whether fluctuating in course or steady improvement (Table 2).
Major Theme
Recovery as a process
Sub-theme
‘ups and downs’
P7: “Moving forward, I have set a lot of goals for myself. I think OCD can affect the process but I can affect OCD too *laughs* [.. ..] It may not be an easy ride, there are going to be ups and downs but it will be entertaining.” (16 year old girl)
P8: “It has been a mix of emotions through the journey. […] it is going to be difficult from here on. It may not go smoothly. […] OCD may affect course of my journey but I should be prepared for it.” (12 year old boy)
P10: “I have experienced a lot of suffering. It has been a lot of ups and downs for me. I heard many people say that life is not easy. It doesn’t go smoothly. I didn’t understand what they meant by it then. But now I have come to understand what it means. […] I am better prepared for the future. […] it is going to be ups and downs but I will be able to overcome it better because I experienced difficulties already, so I will be able to face better.” (17 year old girl)
Sub-theme
‘slow and steady’
P1: “First it was like very difficult […]. I found it disgusting and gross. It was a lot of pressure in my head. … Slowly, it became lesser and lesser… now it is easier, much easier than before. Slowly and gradually, it will further reduce and go away” (10 year old boy)
P4: “It is like a continuous process. I just want to keep developing. I want to keep improving with regards to OCD, slowly and steadily.” (16 year old girl)
P9: “I want to become something. I want to achieve something. It may take a lot of time […] but to get there I have to start working on a lot of things. Gradually over time I am sure I will get complete control over myself and my behaviours.” (11 year old boy)
Barriers and facilitators to recovery
The personal and socio-cultural influences on the pathways to recovery forming the barriers and facilitators are presented below. ‘Internal’ and ‘external’ are the two major themes identified for both barriers and facilitators to recovery in childhood OCD. The identified sub-themes are systematically organized in a logical sequence, progressing from awareness to help-seeking, through the treatment process, and finally to post-treatment wherever possible.
Barriers to recovery
The three sub-themes classified as 'internal' and the six sub-themes categorized as 'external' are illustrated below with three excerpts from the interviews for each sub-theme.
Major Theme
Internal
Sub-theme 1
Lack of awareness
P2: “I would tell everything to my mother, but I didn’t know this could be a mental illness. Or that it is something for which I can get help.. [..] I had no clue was going on, so I didn’t talk to anyone about it.” (15 year old boy)
P4: “Ah! Like it started very early but I didn’t realize it and then. But now that I think about it, I think it all started when I was 11 years old and perhaps when I was 12 years old it started getting severe… I used to have a lot of trouble doing things because I wouldn’t sit in most of the chairs in my house or sofas – but no one knew what was going on. I came here only when at 14years old. Oh my God! It took me 3 years.” (15 year old girl)
P7: “Had I known that the kind of thoughts I had and my behaviours were a disease, I would have sought help much earlier.” (16 year old girl)
Sub-theme 2
Poor motivation to seek treatment
P1: “I didn’t want to go to the doctor. I was scared… I kept telling my parents that I didn’t want to go. They wouldn’t listen. So, I would go into my bedroom, cry, hit myself with a pillow.. ah, it was very difficult for them to bring me here. […] I was moody!” (10 year old boy)
P3: “My own laziness comes in way of following the strategies learnt in sessions. I am trying to overcome it.” (11 year old boy)
P9: “I was suffering but going to a doctor was not something I liked to do at all. [.. ..] I was not co-operating with doctor. Talking to them did not help me, it only made me angrier. So, I would rather not go for treatment.” (11 year old boy)
Sub-theme 3
Perceived stigma
P1: “I was not willing to meet doctor. I was scared. [….] I was not comfortable. I was not ready to talk about what kind of thoughts and the exact thoughts that I was getting. [.. ..] because they are really bad and dirty thoughts. What would they think of me? How can I talk openly about it?” (10 year old boy)
P8: “When I was asked by my friend about tablets I took and I couldn’t answer, I felt bad. […] at times I felt like not taking medicines to avoid embarrassment.” (12 year old boy)
P10: “I wanted to talk about it, but I kept it to myself. [.. ..] when I tried to bring it up subtly, my mother would react by saying ‘Ok, what? shall I tell your father to take you to mental hospital’. [.. ..]. That kind of put me off from saying anything. I was scared if they would label me as being ‘mad’ or ‘mental’. How could I go and ask them to take me to a ‘mental hospital’. […] I was scared what my parents and others would think. So, I preferred not to tell anyone.” (17 year old girl)
Major Theme
External
Sub-theme 1
Poor parental support
P1: “In the beginning my parents used to say, ‘why are you getting these thoughts, you SHOULD STOP, you should control your thoughts like that’. But they failed to understand that it was not under my control. It was a very difficult period, I would feel very guilty and blame myself for the thoughts.” (10 year old boy)
P7: “Even now I feel very bad that my parents don’t take anything seriously. When I first realized that my behaviour was a problem and they refused to accept the condition, then I was completely under the impression that ‘my parents are not with me’. I want them to help me recognize my problem behaviours in a better way. Probably then, I would feel they recognize OCD as a problem and understand me in a really good way. There is a mismatch in my views and that of my parents’ - so this thing is always a BIG deal for me. […]” (16 year old girl)
P8: “When I started telling my father about my thoughts, he tried to say positive things but I don’t think he understood me or what I was going through […] I didn’t know who else to go to.” (12 year old boy)
Sub-theme 2
Parental anxiety
P6: “My parents are just a little worried that my OCD might come back again. I don’t want them to worry about that. It would be a little nice if they could be not worried about it. That’s all I would want them to do.” (12 year old girl)
P8: “I felt sad when my father asked doctor the details of my problem like – what it was and why it happened. […] may be he was also scared or sad. On looking at him he appeared as if he was WORRYING about my problem. When I see my father like that, I also worry more.” (12 year old boy)
P10: “When I was ill, I wanted my mother to be next to me but my mother used to CRY. In fact, whenever I went to her with a problem, she would also start to cry with me. I wondered if I was bothering her a lot. [.. ..] She should not have cried at that time. [..] She could have said, ‘Ok, come let’s go outside we can go for a walk’, ‘don’t cry’ and things like that would have helped me feel better but she also started to cry.” (17 year old girl)
Sub-theme 3
Inadequate awareness in schools
P2: “At school, I could not focus on classwork. I would go blank.. […] teachers shouted at me and complained to my parents saying I was not following their instructions. […] I started to cry and scream in class. They told my parents that I misbehaved in class. I could not understand what was going on.” (15 year old boy)
P3
“Because of the OC symptoms many teachers thought I was a dumb student. [.. ..]. Ah, there is a coordinator in my school [..]. She is like – ‘Come here, what is your problem?’ I said I wanted to go to washroom. [.. ..] She said, ‘from today you don’t go to washroom’. I was like, ‘What is happening? I couldn’t even say a word about how I am feeling’.” (11 year old boy)
P10: “In my 8th standard when I didn’t go to school, there were some rumours that I was possessed by a devil. Same thing happened when I was in 10th standard also. One of my friends used to call me over phone and tell me what other girls were talking about me. It made me feel sad.” (17 year old girl)
Sub-theme 4
Social misconceptions about illness
P2: “People thought I did drugs. Some said it was because I played ‘Blue Whale’ game that I became like that. But I didn’t do any of that. […] I would think about it and wonder why they said things like that.” (15 year old boy)
P7: “Once at a family function, my relatives noticed my repetitive behaviours and started talking amongst themselves. [.. ..] they made funny faces and frowned at me. [. ..] My aunt who tried to plait my hair was very angry with me as I insisted on ‘perfection’. She scolded me saying I had got this problem for my wrong-doings in my past life. [.. ...] Some others said I was cursed and I won’t be happy in the future.” (16 year old girl)
P10: “My relatives would talk about me. Once an aunt called me and said it was the effect of evil eye or black magic on me and that I should seek help of faith-healers and perform some rituals to get rid of it. [….]. Slowly my neighbours stopped coming to my house. They behaved as if something was wrong with me [.. ..]. I overheard some people talking about me and calling me ‘mental’, an ‘idiot’ and saying that talking to me was not a good thing to do.” (17 year old girl)
Sub-theme 5
Myths about medication
P2: “My friends and relatives ask me, ‘what? Are you taking tablets? How many tablets will you take?’ […] ‘Why you are taking tablets? You should stop it, don’t take tablets. It is not good. They are harmful.’ […] I worry whether it is really so and what will happen as I have been taking for a long while.” (15 year old boy)
P8: “My family members are sad. They are worried that it may have side-effects for having used for so long. […] they say that I should put in effort to control my thoughts and behaviours. […] and I try to do that.” (12 year old boy)
P10: “We are worried about taking tablets for long duration… I read online that medicines are harmful. They may cause problems to kidney. I am taking regularly so it may affect my kidney. I have irregular periods, I don’t know if it is because of this medicine. […] My father too expresses his concern and wishes that I learn to control my problem without relying on medicines and am taken off the medication.” (17 year old girl)
Sub-theme 6
Frustrations in treatment process
P5: “I must have seen at least 10 doctors.[.. ..] I used to tell them that I was scratching my hands and that was my problem. […] Actually, when anyone touched me, I would brush over that area but I didn’t talk about my thoughts. I was not asked, and I didn’t talk. [.. ..] simply we were going to different doctors and they were prescribing creams for application.” (14 year old boy)
P9: “The first doctor was a general physician who referred me to a psychiatrist. [..] then we consulted a number of doctors. Different medications were prescribed for me, I didn’t know what it was but I just took [.. ..]. My parents were going to and fro between allopathic doctors, homeopathic and ayurvedic doctors. [.. ..] I was being taken to temples as well.. I had no idea what was happening and I was suffering all along” (11 year old boy)
P10: “I visited a DOZEN doctors. […] I was taken to multiple places, met different people from neurologists to even faith-healers. Not that anything helped but in the process, I had some very scary experiences. [.. ..] neither my parents nor anyone else understood what was going on with me.” (17 year old girl)
Facilitators to recovery
The four sub-themes classified as 'internal' and the four sub-themes categorized as 'external' are illustrated below with three excerpts from the interviews for each sub-theme.
Major Theme
Internal
Sub-theme 1
Will and determination
P7: “Moving forward, I have set a lot of goals for myself. I think OCD can affect the process but I can affect OCD too *laughs* [.. ..] It may not be an easy ride, there are going to be ups and downs but it will be entertaining.” (16 year old girl)
P8: “It has been a mix of emotions through the journey. […] it is going to be difficult from here on. It may not go smoothly. […] OCD may affect course of my journey but I should be prepared for it.” (12 year old boy)
P10: “I have experienced a lot. It was a lot of ups and downs for me. I heard many people say that life is not easy. It doesn’t go smoothly. I didn’t understand what they meant by it then. But now I came to understand what it means. […] I am better prepared for future. […] it is going to be ups and downs but I will be able to overcome it better because I experienced difficulties already, so I will be able to face better.” (17 year old girl)
Sub-theme 2
Self-discipline
P2: “OCD, we should only solve that OCD. Now, if I am washing hands 2–3 times, then I should not be doing that. I should tell myself not to wash anymore, not to repeat my action and I should just go. By practising that only, OCD can come down! (15 year old boy)
P5: “Following a good routine that includes taking tablets, practicing mindfulness will go a long way in making one feel better… I am also keen on learning more exercises and techniques that I can practice at home that will help the course of this journey.” (14 year old boy)
P10: “If I exercise self-discipline, I may feel more confident to overcome those situations where OCD is affecting me. […] say by trying to control my feelings in a given situation and not fall in the trap of my weaknesses.” (17 year old girl)
Sub-theme 3
Keeping calm
P5: “I want to stay calm. Doing mindfulness has really helped me feel better.” (14 year old boy)
P6: “It is mainly the tension that’s coming in way. Because I am tensed, I am not calm enough to actually tackle it. So, that might be coming in way.. [...] Practising relaxation or doing activities like reading books and listening to music have helped me better able to handle day-to-day problems.” (12 year old girl)
P7: “I always want to be happy – just like you know be at peace with oneself. OCD definitely disturbs that equilibrium but putting effort to stay calm and relaxed in every situation helps in fighting against OCD itself.” (16 year old girl)
Sub-theme 4
Sense of purpose
P3: “I know OCD is just one bit in the bigger picture called life.. but yeah right now it is an important piece of the puzzle. So, obviously I need to look at it, see how it is affecting my path and settle those issues.” (11 year old boy)
P6: “I set myself some goals, I am not quite sure though… but OCD may come in way of doing certain things that I wish to do [….] if I have excessive concern with dirt and all, I will not be able to go into the community and work towards making a change. So, if I try to get rid of all this then maybe I would be able to do all that also.” (12 year old girl)
P10: “I envision my dream and going towards it… in fact every night I remind myself of what goals I have set for myself in life and imagine achieving them. This helps me bring my focus back to working on daily hassles because of OCD.” (17 year old girl)
Major Theme
External
Sub-theme 1
General awareness
P1: “So, initially my mom told my aunt about my problem to my aunt. She spoke with me and told me not to worry about those thoughts. She then told my mom that it could probably be OCD and I would benefit from medications. That is why we came here for consultation.” (10 year old boy)
P5: “Seeing me cry and scream, my aunt wondered what had happened to me. In fact, she was the one who brought me to hospital the first time. If she didn’t suggest that we take treatment for it, we would have come very late or not come probably. […] she is family and she has always been supportive. […] if people know about OCD, they will come to know early when illness starts.. I mean family can identify early - it will be a good thing” (14 year old boy)
P10: “A distant relative of ours, told my parents to consult a neurologist they knew. Until then, I was being taken to faith-healers or performing rituals to get rid of the problem. [.. ..] although it didn’t help my symptoms per se by consulting the doctor, we were directed to a psychiatrist from there and subsequently got the right kind of help.” (17 year old girl)
Sub-theme 2
Parental support
P5: “My mother has been my biggest source of support. On noticing my behaviours, she took me for help in the initial period itself. […] After coming here, I discussed all my problems with doctors and they said it was obsessive-compulsive disorder.” (14 year old boy)
P6: “My parents have always been there to support me and they kind of remind me like how to tackle by saying “remember what they taught you” – so that helps me.” (12 year old girl)
P9: “My parents have helped me reduce my compulsive behaviours. No matter how difficult, they distract me from doing it like – by clapping hard and very loudly to disturb me or take me out of that situation. [.. ..] My life was derailed, it has been a very difficult journey. My father’s support mattered the most.” (11 year old boy)
Sub-theme 3
Peer support
P4: “In the beginning, I was just SO EXCITED about it – like it was something new right, so I told my friends that I was attending therapy sessions for OCD […] A friend of mine has anxiety and she was doing CBT through an app. She said that therapy really helps and encouraged me to go.” (15 year old girl)
P7: “Going forward, I think I want to take my friends’ help. At times, they forced me to try the street food, which I always avoid. It helped me facing my fears to some extent. […] I guess similarly, if they continue to help me in other scenarios, I will be able to better handle my distressing thoughts.” (16 year old girl)
P9: “I wish to have nice friends, hmmm true friends with whom I can share everything – from things related to studies and games to problems I face and difficulties I go through.” (11 year old boy)
Sub-theme 4
Good therapeutic engagement
P5: “If doctors spend more time trying to understand the situation, one will feel comfortable to talk about all the issues. Otherwise, to reveal inner thoughts to a new person will be difficult. [.. ..] keeping it to oneself will not help either. Only if we tell the problem, will it be solved. So having a good relationship with doctor is very important!” (14 year old boy)
P6: “Maybe I would say like – talking to someone who you are comfortable with, someone who you trust would make the child feel better. Like with the kind of person you like, if you talk to someone like that then your stress would come down a little.” (12 year old girl)
P10: “In therapy, although it was an unknown person I was talking to, I could express myself and my feelings freely. I could share everything and it was good to know that they totally understood what I was actually going through. I was also taught techniques to handle my worries and fears. I felt really SO FREE that I got a solution from them to take control over my problem and to overcome my fears. Having a professional or a therapist as part of the support system helps immensely in the recovery process.” (17 year old girl)