In our study the main theme of the psychological formation of adolescents, who had experienced surgical repair of congenital heart defects between the ages of 0 and 5 years, was "feeling resistive and strong". During the interviews, irrespective of the subject talked about, they kept emphasizing how "strong and resistant" they had been. A number of secondary factors, the most striking ones being relationships with family and close circles, personal temperament and medical history, determined the depth and the limits of the influence of this theme in their daily lives. Here, we have attempted to demonstrate this theme within the statements of the patients quoted from the transcripts.
Being strong and resistive
This theme that gained prominence in our study was independent of the participants' age and gender. It could be said that the patients put forward loudly the strength of their individuality through the memories narrated, examples given and even the body language during the conversations. We frequently met repetitions of expressions like "naturally I have done it", "of course I have, shouldn't I have done it?", "I did it first", "they ask me to do it", and others similar to these. These challenging verbal expressions appeared in their daily lives and activities in very different ways. Some led lives that did not reflect the austerity of the language they used. This group consisted of the individuals who did not take risks, avoided physical exertion, controlled their impulses well and observed the regularity of their medical controls. The defensive manner that pervaded their language had not upset their functionality. One participant representing this group was a 16-year-old male who was successful in high school and sustaining good relationships with friends. He said: "...When something needs to be done (around the house), they make warnings like 'don't touch, don't lift', which upset me though I know that they do this for my own good. Because, if I do something I never do less than what is necessary, in fact I do the extras! On the other hand, it is I who didn't want to join the physical education class. I think it is unnecessary. Instead, I sit and solve test questions which is much better".
An eighteen-year old young girl, working as a cashier in a supermarket, who knew she was unwell but had made peace with this situation, has remarked: "I am satisfied with my work. It's a little tedious, that's all. Sometimes I help my friends as well. There are those who know that I am ill, but they swear that I am much healthier than they are, because I don't get tired easily... But I don't get into excesses; I don't lift heavy items... I don't idle at home either. I cook, do the dusting... I don't enjoy sitting about like that..."
Another group, although employing a similar tenor of language, consisted of patients with very pronounced denial of illness that were found to be more prone to behavioral nonconformity. They were pretending to ignore the illness continuing to make its presence felt through difficult follow-ups. It was evident that talking about their illness or their feelings was difficult for them. A 19-year old young man attending a night school, and being regularly followed up after two operations in his childhood said: "I remember my illness only once every six months, at the control times... (Smiling) And my mother reminds me of that; otherwise I'll forget all about it... I don't see any problems in me... Anyhow, I don't have any difficulties... I cannot even recall having cried once! But, if those around me or people I love get into trouble, it tends to get fixed strangely in my mind. I love people very much.... It hurts very sharply when I see the needy and the helplessness... I would help all of them if I could".
Secondary factors
Family/close circle
The attitudes of family and the close circle of friends influenced positively and/or negatively the life of the patients. A congenital disease of vital significance that has presented early in the life of the offspring causes, next to profound worry about the outcomes, a feeling of guilt in the parents which is reflected in the exaggeration of an already inordinate protectiveness towards the sick child. One of the mothers who, despite the explanations given by the physicians, could not avoid thinking in this manner has said: "At the beginning I cried for days for this befalling on us; worrying if I had done something wrong during my pregnancy, but couldn't reach at anything... There are cardiac patients in the family, and some did have cardiac failure, but I was told it had nothing to do with these... My husband was angry with me for not having been careful about my nutrition during my pregnancy... Those in my own family blamed me for having done too much house work and making myself very tired... I kept suspecting the use of antibiotics for 3 consecutive days... Everyone around took a blaming attitude towards me at the time.''
This mother's 15-year old daughter, fed up by the protectiveness of her family, has remarked: "Even rope jumping was forbidden. Sometimes we went behind the house with friends so that my mother wouldn't see me, and I got mad when they shouted at me from the balcony... I believe now that they were more restrictive than the physicians. What the doctors didn't but my parents did."
Some families had changed their lifestyle permanently by moving from their hometowns to receive better health service. For example: "When she was a baby, we shut shop and home and came to Istanbul. Everything was left behind and we had no money... We had to stay in a hospital... Her mother was very distressed that she might die any day... Then she had an operation and got better, but we settled here for her follow-ups. It had been more than 10 years, we miss our hometown but this is more important for us."
This father of the 15-year-old kid, a successful high school student, who had grown up recognizing the sacrifices made for her, and had developed a perfectionist attitude feeling the need to return these favors. She said, "I'm happy that my school performance is good, but could have been better. I cannot sleep at night feeling miserable if I got 4 instead of 5 (the top mark)... My parents never put pressure on me... They wouldn't say anything even if I got bad marks; they often advise me not to make myself very tired with overwork, but I do not feel satisfied... They have confidence in me and I do not want to disappoint them."
What the father of a 14-year old girl, who was in normal development through follow-ups after an early surgery, said during the interview reveals the experiences of parents before surgery and through the dramatic turn of events afterwards. "Those days, when she was not yet operated, she would go purple (hypoxic) all of a sudden... I wasn't saying anything to her mother but kept thinking that this child would not survive much longer...During the surgery we nearly died with worry, and cannot describe you our pain... And now you see the result..."
The families of the group of adolescents who had been successfully operated and were continuing "normally" through the follow-ups had developed strong instincts to protect the ongoing normality. This protective and interfering attitude further aggravated the already present periodic frictions between the adolescents and the parents. The statements of the mother of a 17-year-old indicated how such attitudes or protective parenthood remain unaltered despite the passage of years. "...Strong headed is our boy... drinks cold water when hot with sweat, never pays attention to what he eats, indulges in unhealthy things like hamburgers... One becomes the bad person for having warned him... He shouts at me... I don't have to warn my other son who takes better care of himself. It is A. who has to be careful on account of his sensitive constitution... May be he would hit you if you say something to him."
Personality/temperament and sociocultural factors
The defense mechanisms used and the mode of handling this chronic process of medical follow ups by the patients and the families were directly correlated with their personalities and temperaments. What was said about illness and the acceptance of becoming ill in their own cultural surrounds were also effective on these modes of behavior. This can be seen in what the father of a boy, who had reached healthy adolescence after 2 operations, narrated. He said "We took it as God's decision. Nevertheless we were wretched when the doctors made the diagnosis. Yet we didn't question His wisdom, we didn't rebel. The very same God has also granted the cure, because the doctors were able to make my child good."
A cheerful-faced and energetic young girl, who had been operated, commented as "In fact I regarded myself not as unlucky but as someone special... If I have been able to stand up despite all that happened, then I must be special... I was seen as a sick person, and, yes, I am still being seen as one... But this has made me different. For example, in primary school my teacher used to watch over me, and I had friends who were envious of that."
There have also been patients who, on grounds of their personality, reacted negatively to the cautious approach of the close circle of friends to their illness. One claimed as "When I was little and about to do something, I got very irritated when I heard from those around the warning ''but you are ill'. I didn't give indications, though... They weren't meaning badly after all. But, I cannot remember now how many times I must have hit with my fists the wardrobe in my room when I got back home."
Medical history
As all the participants had been operated between the ages of 0 and 5 years, they had virtually no memory of the events before the surgery. They belonged to a lucky group who had been able to survive with the help of successful treatment by the healthcare professionals. Mostly what consciously recalled were scenes resembling the ongoing medical controls. They were regularly admitted to the clinics and those working there were naturally the most important objects in their histories. Feelings like affection, exasperation, respect, fear, familiarity, boredom which echoed in their conversations were unavoidable acquisitions of close and long term relationships.
The expressions about being appreciated, being favored and popularity used by a 19-year-old shop salesman, who had been operated at the age of 2, were striking: "Doctors get surprised every time I go for control. They see me in perfect condition. Apparently I have been their best patient."
On the other hand, the slightly angry expressions of the 17-year-old high school girl, who might have to be operated another time, reflected her anxiety. "Thanks to the doctors for having tried very hard, but I also have heard that mistakes were made in the past... One naturally cannot help protesting at times... What upsets me most is the uncertainty of when it will all end."