Table 2.

Demonstrating Concern

Strategies	Exemplar Quotes
Physical: FM described behaviors that supported the physical well-being of the patient and family members
Assure Patient is Comfortable Concern for family member needs Suggest that patient needs to rest	Yesterday I mentioned to the day shift nurse that you know ‘heck I haven’t eaten anything today; I haven’t thought about it.’ Well the night shift nurse asked me had I eaten anything? That’s incredible to me. They care about me. And they’re not just here drawing a paycheck…It makes me feel valued; it reassures me…it makes me feel really good to be here and that my mom’s here. I know that in a sense that they’re taking care of me too because they care about my feelings and what’s going on with me. (Son of P14, Single Interview, Day 5)
Negative Avoid Patient care Rough with patient	Daughter 1: [My dad] was choking, and the nurse was just kind of playing on the computer- ‘Well you can do that [suction] if you want to’… And my dad was choking, and I said for me to have to say ‘are you going to do something? Like move or I’m going to come and move you,’ …and I went straight to [my sister’s] house and said ‘what did you think about that nurse,’ and she said, ‘I didn’t have a good feeling, Daughter 2: And here he is, he’s having extreme trouble breathing, and I was jumping up and down trying to suck it out of the back of his throat. He was sweating profusely, and his temperature had gone up a little bit, and [the nurse] said ‘oh you can put a wet rag on him if you’d like.’ What the [expletive] are you getting paid to do?…And nurse’s turned his/her back talking to the nurse next door. And my anxiety and temper went out the roof. And I’m watching the clock twenty minutes later they’re still chit-chatting about transfers, job openings, this that and the other. Like okay there’s family here I can take a break. I was livid.…Oh yeah I had to do all that too. I had to keep his mouth…And I knew when I left, they weren’t going to get it done. (Daughter1 and Daughter2 of P13, Second Interview, Day 8)
Emotional: FM described behaviors that supported the patient’s and FM’s emotional well-being
Acknowledge FM Feelings Empathy for patient and FM Optimistic Reassure Show emotions Stay with FM in a crisis Talk to the patient Validate FMs love and concern for patient	He/she listened to me, he/she listened to what I had to say and…seemed to understand when I was about to cry. When I needed that extra pat on the shoulder or…that extra look across the room, he/she seemed to be very in tune with that, and that was just that connection. (Daughter2 and Daughter3 of P13, Third Interview, Day 11)
	If you ask, ‘well it’s been a better day,’ or even if the first four hours were crap, they let you know but not dwell on it and give you the hope that ‘okay since the last four hours have been better,…working towards a positive instead of a negative. (Daughter 2 of P13, Second Interview, Day 11)
	I like it when they talk to him, when they interact with him, even though he is not interacting a whole lot… And I think that brings the best out in him. It engages him, and that’s really important. (Domestic Partner of P8, Single Interview, Day 9)
	He/she let me know how serious her condition was; didn’t sugar coat anything; kept saying ‘don’t beat yourself over this’ and letting me know how good of a daughter I was and how I stood by mama’s side. (Daughter of P15, Third Interview, Day 14)
Negative Blunt False Reassurance Say that the patient cannot hear Tell FM this is all normal	I called and [the nurse] said…‘well he has requiring 16 of PEEP and he’s on 60% of FIO2 and he’s only Satting 89%, and the next step is the oscillator.’ In my mind I’m thinking, ‘Oh my God.’ But he/she’s [said], ‘he’s not actively crumping.’ I’m like, ‘but what you just said to me, like as a family member who knows a little too much and is not thinking clearly, that is very scary.’ (Daughter of P3, Single Interview, Day 3)
	I’ve heard [the nurse], ‘Darlene, keep your faith up,’ that he/she has a member of his/her family very sick, and they came back…If I had not heard that doctor that day, I would have thought, oh that’s wonderful but I think he/she was giving her false hope. (Sister of P5, Second Interview, Day 13)
Psychosocial: FM described behaviors that supported their coping and ability to maintain an intact family unit
Allow FM to Stay During Procedures Assess social situation Bend the rules Encourage FM to participate in care Encourage FM to care for them selves Explain that patient can hear Go beyond regular duties Use personal story to encourage coping	When [the nurse] was here, he/she don’t really stress me about having to leave out the room. [The nurse] let me stay right there because that’s my mama. (Daughter of P15, Third Interview, Day 14)
	He/she asked a lot of questions that probably weren’t on the paper, about our situation at home, ‘do you care for him by yourself, is there someone else there that’s with you? How do you feel about that? Are you stressed at all? Do you think you might want help when you go home?’ It seemed like he/she was truly interested in getting the whole picture. (Wife of P1, Single Interview, Day 2)
	And he/she even asked me to help him/her move mama and put the pillows behind her to help her position and stuff. (Daughter of P15, Third Interview, Day 14)
	[The nurse] said [to patient’s grandmother], ‘yeah, a lot of times they can hear you talking, so say all you need to say to him. Say it in his ear, talk to him.’ It helped her instantly. I saw it because she thought, ‘my grandson heard me,’ and she did not know at the moment whether it would be the only time she would get to say what she needed to say to him. And hopefully he did hear her. But that’s important because…if you lose somebody right after that, that’s going to help you to say, ‘I said what I needed to say and they heard me.’ (Mother of P10, Single Interview, Day 2)
	But [the nurse] told me, ‘you’ve got to go home. You’ve been here two days, you’ve got to go home and get you some rest, you’ve got to take care of yourself,’ I knew he/she was very concerned about me…I felt that. (Wife of P11, First Interview, Day 4)
	I started crying, and [the nurse] said, ‘That’s going to make you feel better, I know the feeling, I’m a nurse now, but I’ve been in a situation, and I always felt better when I cried.’ It just made me feel like it was a person coming just for our family. And he/she didn’t share details but just said something like that, ‘go ahead and cry.’ (Sister-in-law of P2, single Interview, Day 2)
Negative Rigid	[[That nurse] sticks right by the rules; 2 people; doesn’t bend the rules any. …We just want to sit with him, but he/she kicks us out. If our time is limited, we want to be with him every minute we can be with him. And he/she knows how critically ill he is. Like right now, I don’t have anywhere to go, anything to do for two and a half hours, why can’t I sit there quietly on my lap-top? Nothing major’s going on with him. I just want to be there. But, I can’t. (Wife of P11, Third Interview, Day 12)
Spiritual: FM described behaviors that supported spiritual well-being
Acknowledge Faith	When Claude came in, we had gotten a prayer cloth that we wanted to put…over him. [The nurse] explained that that was fine but that also his temperature had been going up; that’s why the room was so cool; so it may [need to] be removed. But he/she honored her request to put it over him and understood that…Even when the nurse came to tell what my father had done [pulled out his ET tube] he/she also [said] ‘continue to pray,’ so that lets me know that you too know the powers that God has as well and that prayer can change things… It makes you feel good. (Daughter of P12, First Interview, Day 3)