Table 5 Sample quotations for coping strategies

Accommodations of daily living

“Everything at a slow pace. In short, I take my time…. and when it comes to [something] for which you need strength, I have to mostly leave it to someone else. And I just need help on other things…. It’s really the resting afterwards and the slow pace when I am doing those things. And I plan my time so I can do things at a slow pace.”

Emotional

“Life gets better.… I mean I don’t know if life gets better, but at least you get better able to deal with it.… Don’t give up. It gets better.”

Social

“Our therapy was coming together a lot and we talked a lot together as a family.… So the power of our family, we are very open to each other. We communicate about everything with all this and that’s our strength now …”

Physical

“Well for this bad heart, he really pays attention to his lifestyle and the food he takes. And he tries to walk regularly.”

Leisure

“The positive point of Barth syndrome is that you are a bit lonely so you do things at home … I can play my own emotion into music …”