Table 2.
Themes and representative quotations
| Theme | Quotation (Ref.) |
|---|---|
| 1. Navigating home nursing | |
| It was a blessing and a curse…I remember his primary nurses continuously saying I know you can do it, but you can’t do it every single day and every single night. You need to have some sort of break. (12) | |
| It’s hard finding nurses. And then the nurses would come and be like “oh yeah I know what I am doing,” and then you find out like no, she doesn’t have a clue. And the companies want you to teach them. And I’ll teach them and they end up leaving so it’s really stressful. (4) | |
| It’s good to keep a nurse for years and years and years. It’s very helpful. (6) | |
| Relying on other people for the welfare of your child is a really really hard thing to deal with. Especially when your child is their job but he’s your child. (8) | |
| One of the things I struggle with is that we trust our nurses, otherwise we wouldn’t leave them alone with our child. But the nursing agency, at least from what I understand, they don’t have emergency training...I think my husband and I are feeling right now, there is a lot of blind trust happening with our nurses. (9) | |
| They have to become part of your family, they have to fit with the personality of your daughter or son, they have to fit with the rest of the family. I don’t really care what experience they come with now. Because we have had girls right out of nursing school that come with no experience. I look for the fit, first. (3) | |
| You want to direct them, but you feel bad. I felt very vulnerable, because they are in my home. And we’re sleeping and you know you pray that all the right background check and training has happened but you are never quite sure…I guess if there were some tips to empower parents. You get to be the boss, you get to set limits, because I did feel like a lot of it was out of my control. We were dependent on this…these services. (2) | |
| They were sending them out to homes and not fully ready for what they had to take care of. (7) | |
| 2. Care coordination and DME | |
| They gave us a list of all the nursing agencies and the supply companies. Who do we go with? I remember being like, I don’t know who to pick and being stressed out about that and supplies…It is all that stress on top of caring. (3) | |
| I came home to a home that I almost didn’t know. It was so foreign to me at that point in time. During all that time, we were getting deliveries for supplies, things I didn’t understand...It was just a crazy experience to come home. You have this dream of bringing your baby home for the first time, and it’s an ambulance ride, you are ambushed by the DME, the respiratory therapist. You are walking into a house where you just don’t know where anything is. (11) | |
| I remember it as this whirlwind of like someone was there from the company that did the oxygen and the concentrators…I have this memory of the house being full of people dropping stuff off. And sort of not knowing who any of them were…when the calm happened we asked each other “do you know what that one does?”...you would have stuff that didn’t go anywhere. (2) | |
| And it is so exhausting having to have battles each and every day in trying to keep your child healthy and at home and safe. They just, they didn’t understand. (12) | |
| The supplies, the ventilators, the suction machines, the mist machines, everything was hugely overwhelming. (1) | |
| [T]o have them come and do training in your home on the equipment you will be given would be very helpful. (8) | |
| Yeah, the day that we got home they had dropped off a bunch of medical supplies, but they hadn’t hooked up the ventilator tubes. So we got [our son] home and we were all excited and ready to put him on the vent at night and I was like “I have no idea how to do this. I don’t know what pieces we need.” And the pieces they gave us were the wrong pieces and we didn’t know what to do, which was not a good situation. (10) | |
| Logistically, also trying to figure out whether we set up his room correct and whether there were certain things we would need. What was the best way of making sure the vent was mobile and the suction was mobile too. Like sorting out all of that stuff was stressful at first. (9) | |
| It’s so hard. It is so hard. You have to give yourself an extra hour no matter where you are going. (13) | |
| 3. Learning as a process | |
| [T]he nurses really cared about making sure we felt completely comfortable. We were trained very well…as time has gone on, it’s just become a part of life and trach changes used to send me into cardiac arrest and now we do them every other week and it’s very regular routine now. In the beginning it was pretty tough. (7) | |
| I can tell you, I talk about it now that is just the way of life, but back then…I just remember like having to do trach cares…which was something I dreaded every day. She would desat, she would turn blue…Now she is helping pull her trach out and wants to put it in when we do trach changes. So, yeah we have come a long way. (3) | |
| Coming home, of course emotionally it was really exciting to get him out of the hospital but also terrifying because it was the first time where we were independently caring for him. (9) | |
| The trach, as scary as it is, it saved my son’s life…It was a very hard decision to come to, but it was the best decision we ever made for him. And he like turned the corner so quickly, just with that because he could breathe. (1) | |
| We go everywhere, that’s what I tell people. The vent, obviously it’s not ideal to have it but you know what, I feel 100% better since getting it. I have a little more energy and it’s a lot more portable. (6) | |
| We have taken him to the beach when he was on all these things. It is all possible…Those are all things that I think we didn’t realize were possible until we saw other parents doing it. And until you are kind of encouraged to say, hey you know what, this is what is medically recommended and every child is different. But push the envelope a little bit so your child has some normalcy because he deserves it. (11) | |
| 4. Managing emergencies | |
| You just don’t know what to do. That is the hardest thing about home care. You just don’t know what you are going to run into, you don’t know what’s going to happen next. (1) | |
| I wish that we had been better prepared for an emergency situation. Yes, you can talk to them all day long and you could say to me “What would you do if this happened?” but that’s not really enough. (13) | |
| There are scenarios, when you are completely caught off guard, what happens when you walk into a room and your child is not responsive…it’s just very different when you get hospital training than what you are dealing with it in the home. (11) | |
| I felt probably less confident about it because we didn’t practice in a realistic manner or in an emergency scenario. (9) | |
| Now I know how you guys feel about when something goes down and all your schooling hits you, stuff’s flying through your head, you’re trying to grasp information, you kind of feel like a doctor at that point. (4) | |
| [M]ore simulated stuff so that parents can see what can happen when a baby is in distress—to show what a plug looks like, to show what it sounds like, what it sounds like for a trach to fall out, maybe situations like that. (7) | |
| Those real-life emergency scenarios. We hadn’t even touched upon…I share that information with any new trach families I come across so they don’t have to experience some more controllable situations. If we can control a situation in a very uncontrollable story line than that is always better. (12) | |
| 5. Setting expectations | |
| It would have been scary, but I would have loved somebody to do that. This isn’t elective, like you have to do it. So I would have rather had someone tell me like “this is how hard it is, it is really hard”. My husband and I talk about it, were like that part was worse, not I shouldn’t say worse than cancer, but it was harder in a lot of ways. (2) | |
| [W]e’ve learned when we talked to other families what you should tell them and what you shouldn’t tell them because everybody experiences things differently and we wouldn’t want to frighten anybody who’s any more frightened than they already are. (5) | |
| I would have loved to talk to somebody before going home. Just to know, you can’t just grab the baby and go someplace. (1) | |
| I think the biggest shock coming home was just all of the other pieces that you have to manage that you just don’t think of. (10) | |
| I had never been told about tracheitis. I now know it is very common, but being readmitted after 4 1/2 mo in NICU, I felt like such a failure…that was disappointing because I just felt like I failed [my son] and was questioning my confidence in taking care of him. (12) | |
| I think that warning me ahead of time. I knew that there would be a lot. But I guess when you’re in the hospital and coming home to all of this, like I don’t think that you could ever really prepare for the amount of supplies you’re bringing somebody home to. (13) | |
| [T]he internet is great, but nothing compares to actually meeting another family face to face and seeing how things are set up…just seeing someone else how they use the vent and trach in home and how they manage things. That I think was the most helpful. (8) | |
| He was talking and eating and everything. I remember seeing that and thinking okay pretty soon I’ll be able to do that. So that was helpful meeting someone…We would just email them and talk about that stuff a couple times. It’s not easy, but there’s nothing to be afraid of. It’s not easy, but eventually you get through it. You can be more, not independent, but not tethered to like a bypass machine. It’s incredibly portable, we go on bike trails, I went up to the top of Mount Washington. (6) | |
| There are so many things that I wish I could tell them so that I could help, at least paint a picture for the future for them. Hey listen, this is my kid, he didn’t have the greatest story but look at where he is now. But at the same time, if anyone dumped the amount of information that I know now, to the person that I was 2 yr ago, I wouldn’t have been able to handle or understand it. (11) | |
| There was an attending…and he told us on one of our multiple readmissions that first year that the first year would be awful, really bad, and the second year would be bad but not as awful. And the third year would start to get a little better and it was the first time any doctor actually said it was going to be bad. It was very blunt and it was exactly what we needed to hear because it was exactly true…It’s nice being on the other side for sure. (7) | |
| I was already scared…It would have been good if I had saw or had more…all the parents like have coffee time, whatever. And it’s good just to talk like this, you know what I mean? You get different ideas…No, it was kind of like I was on an island by myself...It would have kind of prepared me for all of that stuff. I think I lost a couple years off my life from all the stress. (4) |
Definition of abbreviations: DME = durable medical equipment; NICU = neonatal intensive care unit.