Table 2 Model of Quality of Life in pediatric advanced cancer based on perspectives of patients and parents from the present study (N = 16) and professionals from a previous report (N = 20)^a

Physical

Pain management

Physical symptoms management

Energy level

Satisfaction of primary or basic needs

M1: “If you take away the fatigue, he could cope much better with his illness.”

P1: “A day where I have the energy to do certain things.”

Psychological

Emotional distress management

Cognitive symptoms management

Coping with the illness

M8: “There is grief that had to be made, there are changes that were not wanted and that were imposed. So, it creates anger, dissatisfaction, uh …”

P6: “Psychologically soothe, it is sure that when you have anxiety like me, it is important to feel relief.”

Social

Maintaining contact with friends and family (parents, siblings, friends, …)

Positive relationships with healthcare professionals

F1: “Well, it’s seeing people … Being in contact with her sisters or her grandmothers […] Every day, we try to socialize […] So, she calls her grandmother: “Come for a walk. Come, at what time are you coming?” and then, if she can’t, she calls someone else [laughs] …” `

P4: “Keeping in touch with your friends is also important. That’s what really helped me in my treatments... because I knew that my friends were always there to support […] They often came to see me and I found that really good and it didn’t make me feel apart from them.”

Autonomy/independence

Feeling enough powerful and free to make one’s own decisions

Feeling enough powerful and free to do things on his/her own

Living moments of freedom and independence

M7: “Doing things by yourself, well that’s for sure important. “I’m capable now!”, like, “let me do it, I’m capable” … You know, she’s a teenager now.”

P5: “I think, the more involved you are, the less powerless you feel. Because yes you don’t control your health at all, but you are able to control your care, you are able to have a voice in your care, you are able to say: “ok, I don’t want that, I would like to find a plan B” or... the more involved you are, the less powerless you are, because it’s true that you are powerless as soon as you have a diagnosis.”

Pleasure

Laughing

Doing one or more activities that the child enjoys

Feeling pleasure eating

M3: “[…] When she gets to play, have fun, be able to play with her brothers, share, use her colors, do … things she likes […] play with dolls, play … that’s still a good day.”

P3: “For me a good day is to have fun, not to think about the disease. [...] I like to go shopping, uh... go to the movies. It’s rarer that we go to the movies, but I mean like... I go out... like play with my dog. [...] sometimes I watch hockey, because it’s my favourite sport. And uh... I play video games a little bit. It’s very important to have fun, and well just laughing always feels good, because... well when you usually laugh, you don’t think about something that’s... that makes you unhappy, you think about something that makes you happy...”

Pursuit of achievement

Going on with activities the child used to have before being ill

Having similar activities as other children of the same age

Feeling achievement through an activity adapted to one’s condition

Making dreams or wishes come true

F2: “Right now, it’s hockey, so uh … he follows us into the arenas, he’s with me behind the bench, or sometimes he even takes to the ice when he can. So, he can return a little bit to a normal life.”

P5: “You don’t have to be afraid to... to have too many dreams. We’re sick, but if you don’t dream, it’s just going to be painful right now. “

Feeling Heard

Feeling listened to and being informed of follow-ups

Feeling considered as a person beyond the symptoms related to the illness

M5: “To be listened to, oh yes, yes. He wants us to be listened to by the team, it’s important to him.”

P7: “Being consulted in decision-making about your care, that’s important. So I know what’s going on …”