Table 3.
Themes (5-9), subthemes, and quotes related to healthcare team behaviors and contextual pandemic features
| Themes/Subthemes | Quotations |
|---|---|
| Theme 5. Participants valued proactive, frequent, and consistent contact with providers. | |
| 5A. Daily updates with clear, detailed information were critical. | “It helps that we had clear consistent communication…I felt like I was able to perfectly visualize exactly what [the doctor] was saying… I’ve never once felt that I made the wrong decision or that I needed more information.” (Child, WA) “The doctors would call either morning or afternoon after their rounds to update us on his progress. But because they were keeping in contact with us and updating us regularly, it definitely made it a lot easier.” (Child, WA) |
| 5B. Inconsistent daily updates generated stress and anxiety. | “Absolutely for me it would have been a huge improvement if it could have been somewhere within a one-hour window each day–’cause it was all over the board. Some days I would call in at 10:00, not get called back till like 2:00. I’d have 20 texts going, what’s going on for the daily update? And I’m like, no, guys, I don’t know yet.” (Child, WA) “There were periods of time where I had a lot of difficulty getting through to people in the hospital to get status reports. And when someone is that sick and that touch-and-go, if you don’t hear anything for a day, it was very upsetting and very frustrating.” (Other relative, NY) |
| Theme 6. Compassionate communication coupled with humanistic acts were highly valued by distressed families. | |
| 6A. Relaying empathy and concern for the patient were extremely meaningful. | “Every single one seemed present, seemed very empathetic that I couldn’t be there, very gentle, very patient. And that helped me a lot thinking that they were caring for her when I couldn’t be there.” (Child, WA) “I felt that they were really concerned about him, his well-being. I even felt that they were concerned about me. Sometimes when they called me, it’s, wasn’t always about him. They would call to check on me to see how I’m doing.” (Spouse, CO) |
| 6B. Above and beyond acts of kindness made a big impact. | “After he passed, the doctor called me and said that he had passed and that not to worry, that he had held his hand.” (Spouse, WA) “They were also kind enough to ask to send photos, which they printed and hung up in his room so that whenever he did wake up he would be able to see faces of his loved ones… I think that was very helpful and key in his progression and getting better during that time… I had one nurse even tell me, if you want to write a letter to your dad, email it to me and I’ll read it to him.” (Child, NY) |
| Theme 7. Videoconferencing fostered a reassuring and shared experience between family members, patients, and providers. | |
| 7A. Seeing the patient via video provided significant reassurance. | “The number one thing that helped the most with stress was having a virtual FaceTime, being able to see and talk to him even though he couldn’t talk to us. The nurse would put the iPad next to his shoulder, and we would talk to him. I really think that had a lot to do with him coming out of it.” (Sibling, WA) “We were very much involved in a lot of what was going on. That helped tremendously to keep the stress level down because we didn’t have to think about what was happening or what was going on. We actually got to watch it all take place… When you can see who you’re talking to, it resonates with you much more than when it’s a telephone call.” (Sibling, CO) |
| 7B. Video calls helped families to feel like part of the care team. | “I think [video is] good. You can see face-to-face–because sometimes that emotional connection … it helps… when you’re able to see their emotions, you’re able to see how they feel regarding your loved one.” (Child, CO) “But what made it easier is the video visits, video calls and daily updates… Even when he was intubated and not responding, we still felt like we were included in his care.” (Child, WA) |
| 7C. Video calls with multiple family members allowed for additional support and family bonding. | “Even after the video visit would be done, we would stay on the video chat with each other. And all of us would talk because everybody was isolated at that time. We would all stay on the video and support each other.” (Child, WA) “We set up a multi-conference with both my daughters that don’t live here and all of us here so that we were able to sort of say goodbye. It would have been a lot harder without that. That was greatly appreciated.” (Spouse, WA) |
| Theme 8. Family members had high levels of appreciation, gratitude, and respect for providers. | |
| 8A. Many families were thankful for and confident in the care. | “Our doctors were staying on top of what the latest recommendations for the treatment were. And when he was getting really, really bad, we thought we were going to lose him, they proned him and did that every night, which actually helped him significantly get better. So I am happy with the overall care definitely because I felt like they were staying on top of the latest things to treat COVID.” (Child, WA) “I was really grateful. Before I got off the phone, I would always tell her thank you so much, and that we’re praying for y’all and y’all family. I want you to know that. And that I really appreciate the work that you’re doing. You’re risking your life to take care of another life.” (Sibling, LA) |
| 8B. Participants acknowledged the hard work and sacrifice of the healthcare workers. | “I don’t think they were eating well. I don’t think any of them slept. I mean, seriously… I can’t say enough good about the staff there. They were wonderful.” (Spouse, WA) “I can’t stop praising the medical team at that hospital. Really above and beyond.” (Other relative, WA) |
| Theme 9. Pandemic burdens weighed heavily on family members. | |
| 9A. Societal contexts and media exacerbated personal experiences. | “When we’d hear knuckleheads out there saying that this is all a hoax and made up and we’ve got my wife dying in the ICU. Looking at that kind of stuff would just make my head explode.” (Spouse, CO) “The mistake of turning the news on and watching the news. And then social media, everybody going insane. And then right in the middle of everything there just happened to start riots going on.” (Spouse, WA) |
| 9B. Rampant spread of the virus was devastating. | “And since we lost him, my neighbor was sick with it, and two people that I know have lost their husbands as well. So every time that happens, it’s revisiting all the angst and everything that comes with that.” (Spouse, WA) “There’s three other people in my family who got it too. And I just thank God that they’re all OK, and they’re doing well. It was like a triple effect.” (Child, CO) |
Definition of abbreviations: COVID = coronavirus disease; ICU = intensive care unit.