Table 1 Examples of participant quotes related to benefits associated with LT

Health

Eight year old boy: "(My liver transplant) doesn't make me feel anything. I'm still an ordinary kid doing what ordinary kids do. It's just that something is wrong with my liver."

Parent of four year old girl: "I'm just very, very thankful that I've got a daughter who is happy and healthy, and has her whole life in front of her... So ultimately would you wish you wouldn't have had to gone through it? Yes, but having gone through it and seeing her do so well, I can't imagine our lives not having gone through that process."

Parent of fifteen year old girl: "Back then it was scary (because) she was on the waiting list for three years. We didn't know when she was going to get one and it seemed she was getting sicker and sicker by the day. But now, she's been doing good for so long. It is so much easier."

Interviewer: "How has her transplant affected her?"

Parent: "I think it affected her in a good way because you know she can do whatever she wants to do..."

Physical Activity

Interviewer: "How has your child's transplant affected him in terms of his ability to move and play and sleep and the things that kids would normally do?"

Parent of eleven year old boy: "Well it was huge. It was like his rebirth."

Sixteen year old girl: "Now I'm well but before the transplant, I was out of breath a lot and I got tired really quickly. Just couldn't do things. I couldn't do sports or I couldn't get up the stairs. I had to have a rest all the time. I couldn't go to town with my friends or anything like that."

Parent of seven year old boy: "I think he can do pretty much anything."

Interviewer: "Is there anything else that you'd like to tell me about his life following a liver transplant?"

Parent: "He's active, he does everything, like we don't limit him to anything. I mean it's up to him... He knows where his limit is. You know, he plays hockey, he enjoys hockey, he just enjoys so much, is so energetic. So it's just like he has never been sick."

Relationships

Interviewer: "Were friends supportive of you?"

Seventeen year old boy: "Yes because I told them all about my transplant and they understood and they stood by me... They got to know me, so they accepted me. And all through school they were nice to me. They helped me get through a lot of things. Some of them even said, 'if anyone picks on you, talk to us about it'. They helped me get through school life."

Interviewer: "How has receiving a new liver affected life?"

Parent of five year old boy: "It's all improved, less restrictive with his medication and his special feedings that he used to have. He's got more time to play and it's expanded his friends, and time he can spend with them."

Parent of sixteen year old girl: "As far as she's concerned, she's normal..., she's not different (than) anybody else. It's just part of her. She lets all her friends know. If she's not well and she's out with them, I know that they would ring immediately because they would look after her. But they don't treat her differently than anybody else."

Overall HRQOL

Parent of twelve year old girl: "With regards to quality of life, my daughter has been remarkably healthy and has progressed very well. In terms of her physical development, she looks normal. In terms of her stamina, I would qualify that as normal. She is a straight A student in school. She is very self-motivated. Other than the fact that she is in clinic twice a year and has medicine to take twice a day, you would never know she has challenges. She is as normal as her brother."

Parent of four year old girl: "The only painful part is when they take her blood and usually, that's just a quick thing and then it is over. From my point of view, she doesn't have a lot of negative associations with the hospital or even with the whole transplant experience because luckily she hasn't really been that sick. Since the transplant, her development has caught up. She is running and jumping like a normal child her age whereas before her physical development, she was behind because of her liver disease."