Table 2.
Missing sense of self-domains and sub-domains in HRQoL instruments
| Sub-domain | Direct quote |
|---|---|
| Identity formation domain | |
| Matured faster | I did get a lot stronger… I remember walking around the hospital; nobody was there to babysit I was always very smart for my age but I ended up being a lot more mature and smart because of cancer. I’ve experienced things that other people don’t understand and I was 9 |
| Feelings of guilt (obligated to protect body; being a valuable member of family/society; survivor guilt) | I felt like I needed to spend more time and energy to get my outward person to match my inside person after everything they did for me I made a lot of friends who had cancer; most of them are dead now. I catch myself thinking why did I survive? Why didn’t they? That’s something that runs through my head quite a bit There isn’t anything, no obstacle that’s going to stop me from giving back and helping others. I would feel guilty if I didn’t |
| Desire for autonomy | I was and am very independent. I wanted to shun away from them always having to take care of me I’m sure they (school) would’ve provided me with a little cart but I never ask for that stuff. I wanted to do things on my own |
| Not afraid of death | For someone to be able to say, ‘ok, let’s just do what we can do; maybe we live, maybe we don’t.’ That’s a big step for a teen |
| Desire for normalcy domain | |
| Missed opportunities | My kids will show me words and my vision has been ruined from the cancer so I can’t see it. There’s a lot of things that I miss out on It upsets me that I can’t do the normal things I used to do like watching a movie |
| Make effort to be “Normal” | If somebody says, ‘oh he has cancer,’ I would say, ‘no, I don’t know what you’re talking about. No, not me I looked so foreign when I looked in the mirror. My hair was curly and brown when it used to be blonde and straight. I straightened and bleached it just so I could feel normal again The doctors were my family. They were one of the biggest parts of my life and death so it’s really weird that after I’m cured they forget about you but I still needed things to feel normal |