Table 2 Themes and Illustrative Quotations
Themes | Sub Themes | Quotations |
|---|---|---|
Parent-child role relationship | “I mean I have 3 other kids but it feels like being a first time parent in a lot of ways. It’s just, his health needs are so different that I often feel like I don’t know what the right answer is and how to do things correctly with him…Even teaching him to eat is very, very different than my other kids. I feel like everything is just kind of a different path.” | |
Parent self-efficacy | “I think it should be started, they should start talking to parents about this you know the, first week or so that the baby is there, to start introducing to the parents how life is gonna change. If they give it to the parent when the baby’s discharged and I get thrown all this information, parents will not even listen. You got a brand new baby and you gotta figure all this out. It’s kinda like uh overwhelming. It’s like introduce the parent little by little while the baby’s in the hospital, these are gonna be the things the baby’s gonna need, be aware of things that you know might help, um start contacting different departments…for the parent to be aware and be involved you know and start researching before the baby actually comes home. And you know then it probably relieves the parent of a lot of stress and a lot of um anxiety, you know, knowing that you have this extra help, that you’re not alone, and you’re not trying to figure this baby out by yourself.” | |
Challenges to transition | ||
Comparison to normal babies | Feeling babies are more fragile Prone to illness More critically ill Feeling like their development is behind | “Because of everything I saw him go through inside the NICU. When we first got him, he didn’t look like a normal baby. He looked like deformed. And it’s just different things and things that other babies go through, all that other stuff as well…it was a tough experience.” “I mean I have 3 other kids but it feels like being a first time parent in a lot of ways. It’s just, his health needs are so different that I often feel like I don’t know what the right answer is and how to do things correctly with him…Even teaching him to eat is very, very different than my other kids. I feel like everything is just kind of a different path.” “Because other, naturally other children are healthy so they don’t need the extra care, they don’t need to go to the hospital so much often. And with my baby, it’s, I have to make sure that he’s clean and whoever touches him has to wash their hands. I have to make sure that the colostomy bag is clean. And I take him to therapy a lot, every week. And so it’s, it’s you know so different between a healthy baby and an unhe-, a baby who’s been in the NICU and has had problems.” “I guess there’s one of my main concerns is that I know my baby’s a little bit delayed. So I’m just afraid he might not catch up even though I’m doing everything I can so he can catch up with OT, PT, and infant stimulation. I just feel like maybe my baby’s not fast enough.” “And I get scared by the time he reaches the age to go to school, I don’t want him to get bullied or kids laugh at him because he’s probably still a little bit delayed.” |
Concern for mental health | Feeling more sad Anxious | “I mean every now and then there’s kinda like the feeling of anxiety and, and a bit of depression because you know I’m home all day, not really any interaction and it’s kinda stressful taking care of an ill child who, you know, you’re trying to do your best for but you feel like your best kinda isn’t enough.” “Well, one thing about being in the NICU, especially if you’re in there for a long time um, stress and anxiety and depression really, really can take ahold of you. I would say definitely should be a part of it is to teach parents how to occupy their time in a different way, even if they’re at the hospital, do some scrap booking or take pictures or decorate your baby’s room, do something that’s gonna you know lighten up the moment” “Um you know [I needed] also some advice and help to not feel so sad.” “Before I had my baby, I was planning on going back to work. But since my [child] needs special care and there’s no one here at home [who] can help me with that, I’ve been doing everything on my own. And at the beginning, it was a little bit hard because like I was a single mom and new baby, and you know, I, I, I was doing everything on my own. I was pretty exhausted all the time and I started to become a little bit depressed.” |
Information Needs | Medical equipment Orientation to services ahead of time Directory of services and vendors | “getting to know about the services that are available for you and for us involved with care that he needs, actually being that he’s considered a special needs kid, which I didn’t find out until about a month and a half ago when the insurance was having all these issues...he was considered special needs kid. So, like providing parents with the correct information, not just being here’s this video of how to care for him at home.” “Um, you know, just resources for parents that are, you know, kind of, might be new to it. ‘Cause for us it was a shock. And I think I would have loved for someone to explain to us the process a little bit more thoroughly. Kind of sit there and, and, kind of guide us through the process as far as you know, what can happen. You know, what, you know, what are the possibilities. …just being able to understand, um, all the possibilities of the baby being in the NICU, whether they’re good or bad. And then just, just guiding us through any programs that could be available.” “Honestly when we first took him home, it was all very, very overwhelming trying to figure out how to honestly use the equipment and he was just much sicker at the beginning too. So try to manage his health and then trying to understand all these different programs that are out there, which are very beneficial but they’re not easy to navigate. Um, yeah honestly even if [the hospital] had recorded videos kind of explaining a little bit more about how some of these things work, like explaining what SSI is and what IHSS is, all these programs I’d heard about but didn’t really know about. … I mean we do have a social worker now who’s helpful with that kind of stuff, but yeah at the beginning we weren’t really plugged in with a social worker who could answer those sorts of questions, so something like that could be helpful just to explain to parents how to do all this stuff.” “Honestly my husband still isn’t that comfortable with the feeding tube. I do most of that, he’s still not that comfortable with the g-tube and with the pump. Honestly, if you had basic videos on that stuff online that would help. To kind of be like refreshers and for grandparents and people like that. That could be very helpful, like basic videos, how to, like how do you use a suction machine. I mean you need to learn in person but reminder stuff that would be great” “I guess having just initially left the NICU, I was like oh man I don’t know who to contact for questions about her g-tube, questions about this, questions about that. Because they always you know come and see you after these procedures are done and things. And you meet the doctor for a few minutes, you ask and you have some questions, they come and check on you maybe once before you’re discharged and then after that you don’t really see them until the next appointment. But it’s like well what if something comes up between your discharge and the appointment? You don’t know who to call except to say oh my daughter has a g-tube and there might be an issue with it. So having you know phone numbers, basically a directory to different departments, different doctors, what their hours might be or when offices are closed or what not or you know and email addresses, things like that would be just initially so helpful. Because otherwise I’ve kind of had to wait it out. Sometimes I’m like well luckily she’ll see that doctor in 3 or 4 days so I guess I’ll just wait until then you know.” “I think it’d probably be helpful to have like a packet when you leave with just a bit of summary of all these different programs, like explanations about what they are. I was confused about EI and regional center and all that stuff for quite a while. Like not just contact number but actually like a brief description of what they are for.” |
Ideas to support transition | ||
Looking for support systems | Peer support Family support Really looking for families going through the same thing | “Counseling, or any, comforting or something, you know… that’s one thing I saw… frequently in the NICU. Is that, you know, no one really talked about, you know, this is a possibility. Or, you know, this is what can happen. You know, there’s a chapel downstairs if you’d like to talk to someone. Or, you know, we have a patient specialist that can come up and if you have any questions, or stuff like that” “because you’ve been through so much and sometimes um, um like you need [to] like talk to somebody about your feelings” “[Having] a support group where you could talk to other parents would be useful. Okay, so kind of having like other people’s experience, and like knowing that you’re not going through it alone” “I am on some groups on, like, online, with other parents, and we all ask questions about, oh my kid has been having these symptoms and then it’s the same diagnosis that the other babies have, and they might be similar and you can sort of get an idea what’s going on.” “What might have helped you learn more about taking care of your baby?” “more like actual parent experiences of their babies being in the NICU how their journey to go like being there every day or trying to supply your baby with milk, breast milk and just, just like the whole experience I think would be really good.” |
Including mobile technology and internet into discharge materials | Video ChatHealth PortalVideos/materials available on lineWould also like an in person supplementHotline | “I love it. I usually will Google specific sites, usually there is specific web pages where I can go and find all the information that, uh, is good for me and for the baby, I will always be grateful.” “Yeah, being able to receive stuff like via text even and email it’s awesome.” “And you know if I receive a text or an email I could check it and I’ll be like okay um you know I have an appointment or something like that. It would be, it would be really, really,an app for me it would be um, good.” “I think sometimes video chat would be an awesome way if they had like with her g-tube feedings, I could kind of be like, hey am I doing this right? You know, or can you see what I see? Like I am concerned about this you know, so I should bring her in? Like you know that kind of thing that would be awesome. Just the amount of technology that we have access to is phenomenal.. Sometimes you know doctors will ask me, ‘oh well what does her stool look like’? Well, how do I explain it? It looks like cement that’s not dried yet and it’s green and it’s this color, it’s this texture. So it’s like uh can I just show you? And that’s what I do, sometimes I have to take a picture and I send it through email.” “For me, the best way would be either video chat or like on the phone or something, because you know I can’t always make it down to meet up with someone in person. … and I’m saying speaking to someone is better so you have a full understanding of what’s going on versus like email or text or something like that” "Sometimes [it’s]hard to keep up with all the doctors and all the, appointments, so being able, … to see it, and you know, probably be able to read up on the notes, because sometimes we forget to get the discharge papers, or you know, follow up notes, and we kind of forget them, so probably better if they would just do it all online, so we can just look at it, and you know, print it out if we need it, |
Improving transition of care to pediatrician | “And our pediatrician used to be um one of the doctors that used to see her at the NICU. So that was an advantage and she pretty knew what she needed, um she didn’t need to be asking questions, she pretty much knew exactly what she needed or what’s good for her.” | |
Identifying financial assistance programs | “I signed up last year but it was the longest process of my life. My worker kinda dropped the ball for a minute and didn’t really do what, what’s supposed to be done. And didn’t you know send out the paperwork that I needed to fill out and, and send back to her or whatever. So from May, I signed up in May I didn’t get anything until December.” | |