Table 2 Examples of participant quotes related to challenges associated with LT

Physical activity and restrictions in sports

1 year old boy: "My mom... doesn't want me to play after school activities like hockey (and) football... because I (might) get hit really hard in the stomach."

17 year old boy: "I can't play contact sports because there would be a good chance it could lead to bleeding."

18 year old boy: "I can't play football because that's not good... Football is too rough. It would just hurt me."

Interviewer: "Does that bother you that you can't play football?"

Adolescent: "Yeah... because all the other guys have good livers and I don't."

Care vigilance and restrictions in everyday activities

16 year old girl: "(There are) things I've had to watch out for after the transplant... We were planting stuff in the garden the other day and I couldn't dig in the dirt because of something in the dirt. I don't know what... the binders (instruction guides) say that I couldn't so I didn't take part in that."

8 year old girl: "I wanted to go inside my cousin's house, but her brother had the chicken pox and if I got the chicken pox, I could have died."

Interviewer: "Do you think there is any part of her having a transplant that makes your life harder?"

Parents of 2 year old girl: "Definitely, especially the first year post transplant. For starters, the number of medicines that she was on.... There were a lot of medicines, multiple times a day,... and then the other side of it was keeping her in isolation from anybody who had a cold..., just constantly being aware."

Mother of 4 year old girl: "If I know there are people that are sick then I won't (go places)... We have had... to cancel a lot of family gatherings... You can't avoid life, but if I know someone is sick,... I can protect her as much as I can."

Difficult medical procedures

Father of 4 year old girl: "Vicariously, I can tell that she suffered a lot... We are just trying to forget, although it is very hard to forget what she has gone through... There was no spot on her body that was not punctured. There was no vein that was not touched... It was trauma followed by another trauma. It was not easy..."

15 year old girl: "A biopsy always means rejection. Well not always, but lots of times, like 90% of the time. So I have always thought of a biopsy as a bad thing."

Mother of 1 year old boy: "It is upsetting... It was hard there for a while because... he'd just been extubated. They had to biopsy him and they were worried about intubation and so it is hard. He's not the easiest kid to biopsy."

Blood work: Pain and fear

11 year old girl: "I feel scared because I hate (with emphasis) needles."

17 year old girl: "This is the most useless arm for blood. You'd have to be really desperate to try. Once I had to go to the hospital for a blood test. Sometimes they'll say, 'Oh you have to have a blood test every week to sort out your medicine and everything.' Oh the joy because they're crap! I don't trust them, I really don't. And since they had to try five times, I was like screaming and crying and they wouldn't give up. And I was like, 'Give up, let me go home, I promise that I will come back tomorrow'. I was crying in the car and I then I cried when I had the blood test. Even when I had the drip in - even when they put nuclear medicine in my arm - which is cold, I never cry, but I was like, 'This is really uncomfortable, take it out'. I never cry..., but I cried and ever since then, I don't trust them... I just dread going."