Table 2:

Experiences of Parents of AYAs with Advanced Cancer Demonstrating the Spectrum of Adaptation

Experiences	Spectrum of Adaptation
CONTROL	Guilt and feeling helpless		Recognizing the locus of control
	• And sometimes, when treatment doesn’t work, I feel like it’s my fault, like I chose this route. These were the options given to us, and I made the decision to go this way. What if we would have gone the other way? (Non-bereaved Parent 19) • I just kind of play everything out in my head all the time. On when it started, when it ended. Is it me, did I do something wrong? Did he do something wrong? It’s that whole religion thing, are you bad, so are you being punished? I don’t know, I have no answers. (Bereaved Parent 28)	• You always question yourself, why didn’t we do this, why didn’t I do that, why didn’t I say that? And sometimes I looked around [my son’s] room wondering if he left something for us cause he knew, but, we did the best we could. And I think [my son] knew. (Bereaved Parent 34) • I don’t know how I am going to deal with [my child’s death]. Except to say that, it’s going to be a day at a time and I can’t worry about cancer coming… I can’t let my head go that way…We will eventually have to, but [not now]… (Non-bereaved Parent 6)	• We try to really focus on what’s most important right now…What do we need to worry about and what [we don’t] need to worry about…That’s something we’ve focused [on] as a family and try not to worry about the things that we just can’t change. (Non-bereaved Parent 20) • You can’t solve anything worrying. You really can’t change the outcome of what is going to happen by worrying… just go the best way you can, just go one day at a time, one moment in time, one hour at a time. (Non-bereaved Parent 1)
MEANING	Senselessness Gratitude and meaning-making
	• I remember hearing on the radio somebody saying ‘what’s the worst thing that could ever happen to you?’ and the guy, the other talk show host was like ‘oh, like a spouse dying.’ And I was like, people think, when you think of the worst thing that [this is it] – [but] this is not… this is so bad that it doesn’t even cross the human capacity that you might lose a child. (Bereaved Parent 27) • Not one thing [helps]… Yeah no, there really isn’t anything. I just miss her every second. (Bereaved Parent 37)	• As much as you want to be out of this cancer circle and be normal - I think our new norm is you have to accept it for once. We do our best again and the thing is really you look at it whether it’s the provider, whether the nurses, social worker and people who understand our situation and supporting us. I mean you are really so embraced and surrounded by very, very nice people. That’s what I feel. It has been really quite an experience to see the benefit of the world as well. (Non-bereaved Parent 15)	• And literally you have to embrace each day and be thankful and have some gratitude in even the smallest things… I think that you do find a new sense of gratitude in life. (Non-bereaved Parent 11) • I just felt like I was gonna shrivel up. But I can honestly say that I enjoy my life and I have a measure of happiness more often than not. And I didn’t think I was ever going to feel that way afterwards. (Bereaved Parent 23)
ACCEPTANCE	Denial and questioning Acknowledging and moving forward
	• I sure would like to think I can get comfortable with it, but at the same time, it still pisses me off that she’s not here, but I mean, I’m not accepting it still and I don’t know if I ever will. (Bereaved Parents 29+30) • My family doesn’t want to talk about it… Right now he’s cancer-free and that’s the thing I want to focus on. (Non-bereaved Parent 8)	• I wrestle with people[‘s] perspective of “it’s god’s will”… I don’t think there is a given plan of what is going to happen to my child already… If I thought that his path was already set then why would I be putting him through the tortures of chemo? (Non-bereaved Parent 5) • I’ve thought about everything I could’ve done. But you know, at the time, I wasn’t able to do it because I was seeing my son die. (Bereaved Parent 26)	I have to accept it. There’s no other way around it. My faith gives me that I know she’s in a good place, I know she’s safe, and I’ll be with her eternally one day. (Bereaved Parents 29+30) • There is a time that everybody has to pass away. And sometimes unfortunately that comes sooner for some people than later. And if we can humanly do anything to delay that for the right reasons, in this case, we would do that … You don’t want [death] to happen, but it happens. (Non-bereaved Parent 3)
SUPPORT	Isolation Strength from connection
	• I was so mad at the funeral… I was just so overwhelmed I think. I just wanted to be by myself. (Bereaved Parents 29+30) • I think even in the context of being at Children’s we felt very seen and then as soon as he died, we were cut off from the only place where we were understood… We were in that world for months and that was our whole world. We sat there, we breathed there, we lived there, we ate there, we celebrated our holidays there. We had very weird experiences, very funny experiences, very horrible – everything. (Bereaved Parent 27)	• Walking with another caregiver… sometimes [that was] hard too, because you know you’re hearing their journey as well and your heart breaks for them and what they’ve been through, and that’s been hard too. Because you’re not only processing your own grief and what ifs, you’reprocessing it with other people… So, I mean there’s beauty in walking that road with other people, but it’s also heartbreaking. (Non-bereaved Parent 10) • The general public, they don’t understand anything about what’s really going on, but the healthcare team, they understand. So that empathy to say, “You are in an impossible situation and you are doing good. You’re doing awesome. Keep going.” From a healthcare team that means everything. (Non-bereaved Parent 17)	• I work with a place with 700 employees and probably 40 or 50 people have donated me vacation hours to be here… And they say, “Take as long as you need. When you come back you, you have your job” (Non-bereaved Parent 16) • There was somebody always sleeping on the couch or sleeping on the floor and we’d be walking around them. And his friends are amazing, just amazing. And the support we still have with the friends – they come by, or they come over for football games. We’ve been so fortunate with that. (Bereaved Parent 26)
HOPE	Feeling lost Trusting the outcome
	• It’s hard to stay hopeful. Each time you have it, the more it takes out of you. (Non-bereaved Parent 8) • I was just hoping for some big miracle and it was going to change any day. I couldn’t wrap my mind around ‘he won’t be here.’ (Bereaved Parent 28)	• We’re just people that can do both to where we have hope that she’ll live and hope that she’ll beat the odds - and we aren’t afraid to be let down if that makes sense. We’re very much optimist people and we fight for the optimal side of it with balancing a little bit of reality too… It’s back and forth. You can fear death but then you’re still an optimist. You still hope, hold onto that hope. (Non-bereaved Parent 17) • We just go push forward and make the best of it and hope for the best and it’s not easy. This is the hardest thing he’s ever had to do and this is the hardest thing I’ll ever see him go through. We’re scared but we want to try fighting than not try at all, and this is where we’re at. And it’s what we’ve got to do. (Non-bereaved Parent 8)	• I pray and I believe that God has got her here for as long as he does, and that it’s my job to care for her and fight for her as long as I have her. And I’m hopeful that she’ll live a long and happy healthy life and that this medical treatment will keep evolving, and getting better, and that someday there’ll be some sort of a cure for her, and that she’ll live a normal, fun, fulfilling life. (Non-bereaved Parent 12)