Table 1.
Bereaved Parents' (N = 13) Responses to the Question, Has COVID-19 or Anything Going on in the World Right Now Impacted Your Experience At All and If so, How?
| Code (Number of Parents Using Code) | Definition | Example Quotation(s) | |
|---|---|---|---|
| Change in support (8) | Difference (real or perceived) in the type or level of support felt prior; new/different ways to connect | I mean I guess it's – yeah, it definitely has, especially with so many anniversaries and his birthday and we couldn't be around friends or family. That was tough, since obviously we're trying to stay safe and everything. That was really hard.—Parent 581A | [Our therapist] keeps trying to fire us but we keep insisting, it's pretty funny. I think that's – I think she's the one who's been affected in COVID. I think people who work in that field are just overwhelmed.—Parent 550A |
| No effect (5) | No perceived change in bereavement or support | Well, actually, it really hasn't affected me, except for one way. But I'm home most of the time, anyways, and I don't really see anybody.—Parent 553A | |
| Familiarity with uncertainty/ability to cope (4) | Resiliency, adaptability, perspective, preparation for grief/uncertainty; pandemic making grief more universal | But I think the flip side or the good side of that … that I feel like there's also like a resiliency that we've got that I see other people not having quite as much because we kind of got used to just accepting things for what they were and then trying to move through it. And so I think that there's definitely a good side to it, too, and I think we have a way of coping that we've been able to extend into this time, so I think it's helped us as a family.—Parent 573A | It's not the fear of a pandemic. Because if any group of people are prepared to have their world turned upside down overnight and not really not know the future, those are familiar places.—Parent 505B |
| Change in contact with care/research team (4) | Shift in ways families communicate with their child's care team or research team; can be new/different ways | His care team – we've been visiting them before the COVID-19, and we usually just talk on [about] their lives and told them what was happening with us. So, they've been a very, very big support. But with this COVID-19, we have not been able to do that. But they have sent little notes and stuff.—Parent 582A | So we are in some ways trying to help get some more research in [my child's cancer diagnosis] … So we have checked with them in that sense just trying to understand what's going on and how are we making any sort of progress and with a cure … we've been like participating in … workshops through Zoom and other forms of communication that we'd be able to take part … And it has just helped us – keeps us informed, and I think we still want to be a part of that and that you somehow do care.—Parent 520B |
| Compounded isolation (3) | Physical distancing adding to already present sense of isolation or separation/feeling separate from others | For me, I kind of wanted to withdraw from the world and so COVID, the pandemic sort of played into that. I didn't really want to go out and have much social interaction … I think it's been a mixed bag. I think it's been helpful and what I needed to do at the same time might have slowed things down a little bit.—Parent 590B | |
| Thankfulness (2) | Parents expressing gratitude that child did not experience and/or they could experience EOL care before pandemic | It honestly makes me very – I feel – I'm so happy that [my child] didn't have to go through her sickness during this time. I keep saying … that she was able to receive care without masks and wasn't frightening … she was able to say good bye with the family. She was able to give everybody hugs … I'm glad she didn't have to suffer through this.—Parent 503A | |
| Trigger (2) | Pandemic and associated factors causing increased anxiety or triggering disturbing memories | For a long time I didn't know that was happening and I was having essentially panic episodes and could not link it to anything until I realized oh wait the smell of hand sanitizer is triggering this … There's just a whole array of physical symptoms that I wasn't necessarily connecting to the grieving process … And even our youngest who witnessed everything as a 2 and 3-year-old, all the sudden seeing everyone in masks has that same reaction.—Parent 505B | |
| Forced pause/time to grieve (2) | Time and space to do the work of grieving | Well, it's definitely mixed feelings. Like there's moments where I think it's good to be – if everybody could just stop and take – stop with their lives. And that's kind of like how I've been feeling for the past year and a half or two years, really, since my daughter's diagnosis that my life kind of stopped and I haven't really been out in the world so much. So I think right now is a time when everybody's experiencing some of that. And in ways it's good, like for me it has been good to just have the time to grieve more and really all those feelings kind of come back because it really resembles a lot of how I was feeling right after her passing or even just after her diagnosis … —Parent 520B | For me, I kind of wanted to withdraw from the world and so COVID, the pandemic sort of played into that. I didn't really want to go out and have much social interaction. And I think that's still here even though it's been just over a year now since my daughter died … I think it's been a mixed bag. I think it's been helpful and what I needed to do at the same time might have slowed things down a little bit.—Parent 590B |
| Loss of routine or personal time (2) | Chance in regular activities; less time to be alone | You don't realize your commute in the morning and getting out of your house and the movement and routine how, much of a help those are getting through everything.—Parent 505B | |
| Additional stress (1) | More strain or pressure | I said, you know – we tried to, met up, and we met up a couple of times and after COVID like we're dealing with all this extra stress and trying to do another Zoom thing, we were just like we just can't handle that. It was just hard to organize and motivate to do anything else. We're all pretty kind of stressed and dealing with a lot.—Parent 520B | |
| Constant reminders/no break from grief (1) | Surrounded by items, memories, feelings of grief | And when you take away your routine and now you're stuck in your house where there are the arts and craft pictures and the toys and the stuffed animals. And instead of having breaks from that you're in it all day – that can exacerbate a lot of the recovery stuff.—Parent 505B | |
COVID-19 = coronavirus disease 2019; EOL = end of life.