Table 5. Coping strategies described by children with congenital heart defects.

Coping strategy	Description of coping strategies	Examples
Coping strategies characteristic of all participants
Positive reframing	Participants wrote about ‘trying my best’ despite experiencing greater difficulty in physical activities than peers, or described activities at which they excelled. They also described advantages in being able to avoid certain activities.	‘I can ice skate and play the piano better than they can.’ (Boy, 10 years, MS).
		‘you can get out of cross country which is cool.’ (Girl, 11 years, LS).
		‘I can’t go on rollercoaster; but I don’t care, who wants to have the time of their life and then puke afterwards. Not me.’ (Girl, 13 years, LS).
Consolation	Some positive statements were a form of consolation.	‘I think that I am quite lucky even having a heart problem. Because most people die when they are born or have a heart problem when they are still growing.’ (Girl, 12 years, MS).
Acceptance	Some participants coped by accepting their heart condition and adapting their expectations and behaviours.	‘If I can’t do something then I don’t really bother and I just watch my friends do it’ (Girl, 12 years, LS).
		‘if … ball went off the pitch [my friends] would never make me run and get it.’ (Boy, 12 years, MS).
	For a few children, their heart problem was not the most difficult problem they had to cope with.	‘My heart problem is not too much of a problem, its my weakness down my right side I find more of a problem’ (Girl, 11 years, MS).
Normalising	Participants actively attempted to make their experiences normal by presenting them as similar to the experiences of others.	‘sometimes I get out of breath and tired when I’m running long distances and doing cross country but don’t we all.’ (Girl, 13 years, LS).
Seeking knowledge	Some participants valued the information from routine tests and found additional knowledge reassuring.	‘I am pleased that I have regular check-ups to make sure everything is still ship-shape.’ (Boy, 13 years, LS).
Coping strategies characteristic of all participants (continued)
Managing information	By hiding or revealing their scar, participants chose to whom they revealed their CHD and exerted some control over how they were perceived by others.	‘The only way people know I have a heart problem is when I show them my scar.’ (Boy, 13 years, LS).
	They also expressed concern about ‘losing control’, for example when their diagnosis was revealed by their scar or by others.	‘Sometimes my friends tell that I have a heart problem and every one crowds round me and sometimes left out and feel very upset and very, very sad.’ (Girl, 10 years, MS).
	Some participants demonstrated effective ways of handling questions to actively define their identity, for example to demonstrate that they were a survivor.	‘In the school changing rooms when I could see my classmates staring at the scars on my chest and back, I gained plenty of attention by regaling them with my frightening tale of a close run in with a ferocious shark on the Great Barrier Reef’ (Girl, 13 years, MS).
		‘When people ask me about my scar, I say that … I was lucky to have lived’ (Girl, 13 years, LS).
Coping strategies characteristic of participants in only one of the two severity groups
LS GROUP (Less severe)
Being a survivor	Some participants showed pride in their ability to survive and referred to themselves as special, unique or lucky. They might attribute their survival to having been ‘rescued’ by doctors and wrote about their gratitude towards clinical staff.	‘[when] I get asked about my scar, I am quite proud and feel special to tell people’ (Girl, 13 years, LS).
		‘the doctors at the hospital were clever enough to fix my heart and to make me feel like I’m a normal child.’ (Girl, 11 years, LS).
Distancing	Some participants regarded their condition as being completed in their past with little impact on their life now.	‘my parents …told me when I was a baby I had a broken heart but the doctors had mended it.’ (Boy, 12 years, LS).
		Because I had my operations when I was only 3 months old I feel normal and believe I fit in at school. (Girl, 12 years, LS.
MS GROUP (More severe)
External sources of support	Participants with severe CHD drew on external sources of support, including the special educational needs class and hospice where they felt comfortable. They also valued friends as an important source of support.	‘My friends help me cope through the times I feel bad.’ (Girl, 13 years, MS).
		‘I feel better being in the special class because they’re all like me. (Girl, 11 years, MS).
		‘there’s [a] place you can go to like the hospice to get away from reality’ (Girl, 11 years, MS).