| DOMAIN 1: Providing Love, Comfort and Care |
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| Remaining close and connected to one’s child |
Stay with the child. Don’t go home at night and leave them alone. [Name] didn’t want to die alone. And I’m sure any child doesn’t want to but doesn’t know how to say it. So if you can possibly just move in and be there every moment of the day, because they’re busy and they don’t see every little thing. And you know your child best. So if it is at all possible, someone should be with them 24 hours a day. And don’t let the staff boss you around too much. (P:1) Well, first of all being able to be in the room all of the time with him. And being able to talk to him. And my husband and I would hold his hand or his feet or whatever was sort of poking out from underneath everything. (P:4) So we then went back in and it was a matter of about 15 minutes and [Name] was screaming out in pain. And she had been alone during that period while all of this chaos was going on that, frankly, was totally avoidable had we prepared for this adequately. And then they did manage to be moving as quickly as possible. The intensivist was there and the nurse. And they stayed right with her until she died in the next couple of hours. And they immediately got some pain medicine to her. (P:12) Don’t be afraid to spend as much time as you want with your baby or child, after he or she passes away. You know, we never felt like anyone was rushing us. And never felt like we were occupying space and that we needed to hurry up and get out of there because some other child needed the space…But, at the same time, it was two o’clock in the morning when she passed away and I was allowed to bathe her and everything. And then the nurse asked if I wanted to sit and hold her for a little while again and I declined to do that. I said no, that I had done all that I needed to do for her. But then the next day I was really sorry that I didn’t stay with her a little longer. I kind of felt like we needed to go on and let the staff there do what they needed to do with her…So I would say, “Take your time and make sure you spend as much time as you want.” (P18)
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Emphasize and support the importance of parents’ love, comfort and presence |
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| Providing physical care to one’s child |
We were able to help dress him, help give a shower. We were kind of a hands on family. We were not afraid of anything, you know, holding the urinal or wiping the butt or anything like that. We did whatever we needed to do and the nurses were great about it. (P:9) And by now I really want to be a huge part of [Name]’s care. So the nursing staff was awesome. I got to help change diapers. I got to give her a little sponge bath. I got to, you know, of course, hold her hand and play with her feet. But she is heavily sedated and paralyzed that you are not getting too much interaction. (P:14)
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Facilitate physical intimacy whenever possible |
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| Seeing one’s child appreciated and valued as an individual |
And I had this photo album. They looked at that. We put pictures up. We decorated his room with some stuffed animals. And we had pictures of him up in different places. And they said the pictures of him that really helped them because they were looking at them and they were like, “Okay. This is what we need right here. We need this little boy sitting in this chair with his eyes open.” It really gave them something to work for…It’s almost like they took extra special care of him. But I’m sure that every parent felt that way because that’s the way it was. They made you feel like you’re child is the only one in this entire hospital. And we’re giving him 110%. (P16) I requested that they talk to her even though she probably couldn’t hear them. But I just still wanted them to treat her like a person, even though she was--and they did. They did a great job of that. One of the girls was so young, too. And she was just fabulous, just really giving [Name] what I had wanted for her, the covers in a certain way. You know, it’s your own child. (P17)
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Encourage, model and help parents to provide appropriate aspects of physical care |
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| DOMAIN 2: Creating Security and Privacy |
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| Retaining some control over who enters and what happens in the hospital room |
…they would knock on the wall or whatever. And so I felt that I had my own little corner there where I could look like whatever I wanted to look like. I could cry if I wanted to. [crying] And they were very kind. Nobody invaded my space at all. I invited them in and they came and they helped me. (P:8) …But like I said, after I told him that, he didn’t come back. So I don’t think he liked the way I spoke to him, because he kind of had a cocky attitude, and I was like, “Uh-uh. It’s not going to happen…Because I was just like a mother bear hovering over her cub-- You know, you don’t mess with me and you don’t mess with my child. (P:16)
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Provide a comfortable private space;
Knock first and seek permission to enter room |
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| Having private, uninterrupted moments one with one’s child |
There was no privacy. There was no peace and quiet. And that is a big, big concern, especially when-- I think if we had known that she was going to die as soon as she did, I would have closed her room off to everybody, including doctors that wanted to come in. They could see everything on the chart. They didn’t need to come in and see her. If I had known it was happening that fast, I would have insisted upon no visitors, no doctors, no nurses, except to do what they had to do. There is no privacy. (P:1) Well, I had wished, maybe--I don’t know if this sounds selfish. But he was in a room with three other children and they all were going to live. And I thought to myself it would have been nice, maybe, if he could have a room by himself. But, again, I’m saying that because they knew he wasn’t going to live. Maybe they didn’t have the space and maybe I am being selfish by saying that. But I had this vision in my head that, “Oh, well, if he could just be in this room by himself, and I can have that time.” (P10)
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Provide a comfortable private space;
Give parents a role in determining others’ access to their child;
Permit parents unlimited access to their child |
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| DOMAIN 3: Exercising Responsibility |
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| Being knowledgeable about the child’s condition and care |
My biggest advice is, ask lots of questions and keep asking until you understand it. And keep asking different doctors. Because sometimes you would ask one doctor and get one answer and you would ask another doctor and get another. So it helps you figure out what’s really going on. (P:5) It’s very hard to make these kinds of decisions. And I guess for us, the more information we could get, the better we felt we were able to make the decision… Keep pushing and listen to all of them. But at the end of the day, it’s your responsibility. (P:12)
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Educate parents and provide them with desired information;
Invite parents to participate in family meetings & rounds |
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| Advocating for the best possible care for one’s child |
So we were active participants in that [in rounds] … I had no qualms about advocating that…And I think that would be another thing to advise parents is, you have to be your own advocate. You really do. I mean as helpful as they are, if you don’t demand it, you’re not going to get it. (P:2) Just know your child’s issues better than they do. And become an advocate and make it your full-time priority. Because you can’t wait for them to think of everything because they have so many other patients to worry about. You have to become your child’s number one advocate and not leave. You have to be there when they round. You have to be there when there is anything. You just don’t leave. (P:11) You know, my son was 21. But it was like he didn’t speak up for anything. I took care of everything. Not that he was dumb but he was a mama’s boy. Yeah. So you just have to speak up for what you want. (P:13)
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Involve parents in decision making;
Invite parents to participate in family meetings and rounds. |
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| Noticing and monitoring the quality of care |
The only thing I found, like anything, you need to be there all the time because what would happen-- One nurse would take out too much of her medicine. And because they had already taken it out, then it would be short for the next shift. And so the next shift, of course, they came in. And I said, “That’s too much medicine. That’s not right.” And I would check it. And then, of course, the next girl would come in because there weren’t four out of the 12 that should have been there because the other girl took out five. She is now coming with three. And I said, “That’s not the right dosage.” And they didn’t bother to do the math to make sure (P:6) It seemed we always had new graduates. And my child was very sick. And some of them had never treated a trach. patient or things of that nature. So that was another thing that was always a struggle because we never could feel like we could go downstairs for a soda and feel safe, leaving him in the room. So those kinds of things… But it was just the little things when you didn’t feel confident even looking away because you were afraid they would miss it. Because there was a lot going on. In their defense, there was a whole lot going on. (P:11)
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