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Table 4 Excerpts from transcripts

From: Lived experiences of children and adolescents with obsessive–compulsive disorder: interpretative phenomenological analysis

Sl. no.

Sub-theme

Excerpts from transcript

1

Confusion, fear and helplessness

“When it started, I was just scared. Very scared gripped in fear as thoughts were very unpleasant. I couldn’t talk about it to anyone […]. In the initial days of being told about my problem, I did not understand. I thought it will not go at all. It will be with me forever. I was afraid. I had a lot of questions about it, but I couldn’t find answers.” (P5, 14 yr old boy)

2

Grief and acceptance

“I felt upset and sad ‘Why did I get this type of a disease? Why me? I have unwanted thoughts regularly that make me upset and sad…why can’t I control them?’ I felt sad that whatever the doctors are saying is correct. It took time but I realized it is something I can work on and I can get better.” (P9, 11 yr old boy)

3

Clarity sinks in and battle ensues

“After initial sessions, I got clarity that it was something I was suffering from. Although initially it seemed complex and I thought it would be very hard to come out of. [..] I learnt ways to handle it and kept trying. Gradually it became easier.. [....] I worked on it and felt better. So, that motivated me and gave me the courage to continue therapy and work on improving myself.” (P3, 11 yr old boy)

4

Sense of control and hope

“Over a period of time, I gained confidence. I felt I could control it” (P8, 12 yr old boy)

5

No felt need to disclose due to internal barriers

“I didn’t have any guilt but like I said I just thought I can do it myself. I can handle the situation myself. Every time I used to feel—‘I can do it myself, I don’t need anyone’s help’. (P6, 12 yr old girl)

6

Felt need but no space to disclose

“I wanted to talk but I was worried what my parents would think about me if I talked to them about my problem. So, initially I held back from talking about it.” (P10, 17 yr old girl)

7

Expressed need and compressed grief in family members

“First time I talked to my father about what was happening to me. He told that I should control it and do meditation […]. I think he was not aware that such a problem could exist or what I don’t know. […] but he has been quite disturbed ever since he started taking me to doctor. As a parent, he would be sad I guess. But he makes sure we go to the doctor.” (P8, 12 yr old boy)

8

Seek help but face therapist-related barriers

“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.” (P5, 14 yr old boy)

9

Disruptions in sense of self

“I was feeling sick! […] I was totally off my character when I was suffering from OCD [..] I used to be like’when will the school be over? What time is it now? How much more time to go? At what time I will go home?’ I didn’t have any interest in attending classes or even studying at home. That was so not me. [....] I am quite social, I want people around me to be happy. I often crack jokes. But in that period I went totally silent. I was totally like a statue, I stayed away from people, alone and everyone around were like – ‘what happened to you?’.” (P3, 11 yr old boy)

10

Failure to fulfil role functions

“I had lot of compulsions. [..] my studies started becoming worse. I was very slow, I was very slow in doing things. […] my parents also started giving me bath because, I was very slow and it would delay everything.” (P1, 10 yr old boy)

11

Victim of bullying and social misperceptions

“My elder sister once shouted at me for removing all petals of a flower. I did so in an attempt to make it look proper, because I felt something was not okay about it. I feel quite bad about it. Once I went out with friends to eat ice-cream and I felt the ice-cream cone was not in a proper manner. […] the ice-cream cone was not really round in shape so I just asked the shopkeeper to change it. My friends said, ‘what are you doing, we are feeling embarrassed, we are their regular customer, what they will think?. This is a very bad thing that I embarrassed my friends!” (P7, 16 yr old girl)

12

Initial refusal to seek treatment

“I did not want to go to a doctor. Not for this problem. My mother kept telling like me ‘You should go. It won’t be embarrassing, they will help you get better’. I still didn’t want to go, but finally I was convinced to go. I was scared what the doctors will think if I talked about what was happening to me because it was really disgusting thoughts, not nice things. So, I felt shy to talk about it” (P1, 10 yr old boy)

13

Useful beyond illness

“This phase of life helped me in a way to connect with myself better than being controlled by some part of the brain. [..] I was lazy so I would procrastinate and I was just too scared to try out anything else.. overcoming OCD has definitely helped in developing myself and coming out of other things! Before I wouldn’t be up to trying new things. So, once I agreed to taking treatment for this—I started being open to trying more things.” (P4, 15 yr old girl)

14

It is a personal process

“I told my parents not to tell my relatives or friends. I don’t want anyone to know about my disease.” (P9, 11 yr old boy)

15

Internal battles and chaos

“So, initially it was difficult, very difficult. There was a lot of confusion and uncertainty and also dismay.[…] at first I was avoiding people. Because when I interacted with them, I had thoughts that were distressing. Later, I was taught to face the situation and stay calm. I used to read too. Reading books helped me relax.” (P3, 11 yr old boy)

16

Wishful thinking

“Sometimes, I have a thought—‘if I didn’t have OCD just like my friends, then I would have also – this 2.5yrs of time, I could have had a nice time and spent it more nicely and productively, like they have’. In the sense, they have not wasted their time in any of this stuff.” (P6, 12 yr old girl)

17

Wise in retrospect

“After 2-3 months of my admission in the hospital, I was thinking, ‘See what all things happened to me. If I had told in the very beginning itself, 1.5yrs ago when OCD just started. They would have given me tablets and problem could have been solved. I wouldn’t have had so much difficulty.” (P2, 15 yr old boy)

18

Calm after the storm

“Tackling OCD was toughest thing I had to do. I learnt that life is not easy. OCD will affect my journey from here on too. I am sure about it [..]. but still life will be okay, it’ll be nice” (P9, 11 yr old boy)