Table 6.
Detailed Quotes for Respite Care Theme From Interviews With Care Coordinators for Children With Medical Technology Dependency (N = 15).
| Theme I: Care Coordinators’ Perception of Respite Care |
| I.A. It is a vital resource |
| “You need it. It’s vital.” (CC6) |
| “I think it’s wonderful. I’m pretty sure a lot of them feel guilty, but you have to take time for you. And I tell parents that all the time. Like, ‘Yes, you love your child. But you’re gonna probably be in this for 10, 15, 20, 30, years. You have to find that time to reconnect. Even if it’s once every three months, you have to find some time for yourselves. Leave the child at home with the nurse and go to the Christmas party or whatever together.’” (CC11) |
| “It’s wonderful for her. Because that’s what the respite is for. It’s for the parent … you can just take a break.” (CC6) |
| I.B. It is underutilized |
| “I think it’s underused. It’s really underused. I think the families who I have who are using it are using it more to patch in, like to make a full shift, once a week. I have a family, child, he gets the minimum resource allocation, so it doesn’t make five complete shifts. So the family is whittling away with a little bit of respite every week.” (CC2) |
| “I don’t have a lot of experience with respite care. I’ve only had maybe two cases where the family wanted to go somewhere.” (CC7) |
| “I have not had any families who have taken advantage of respite.” (CC15) |
| Theme II: Examples of Families’ Use of Respite Care |
| II.A. To go on vacation |
| “In the event that the family has a vacation or they have to do something where they’re unable to take this medically fragile child with them, they can always opt to have them go to one of these transitional facilities, so that they receive round the clock nursing services. And that’s covered through their respite.” (CC8) |
| “I have families that do it in-home. I have a mom—twice a year she goes to Jamaica, because she’s from—once a year she’ll take her son. They just went for Christmas. And one year she wants 24-hour care in-home. And so she has usually a family friend who’s trained nearby or her adult son—now he’s trained—nearby. But she has 24-hour coverage while she’s away. And she’s usually gone from four to five days. And that’s how she utilizes her respite.” (CC6) |
| “Some families, like I say, just need a break, and just need to have it, so they can have some little normalcy. Especially if it’s a couple. They may want to just have some kind of—even if it’s a single parent, just say, ‘OK, I need some rest.’” (CC9) |
| II.B. To add to nursing hours |
| “Respite care is just giving the family more hours for nursing.” (CC9) |
| “[A] lot of times, respite hours are also used when the amount of monthly hours that they were originally approved for is just not sufficient … mom and dad … still have obligations, and they still have things to do. And they have other children … and other commitments…. They need to dip into their respite hours, in order to have a nurse stay longer. Or to have another nurse come in to cover the time that mom and dad need to be away.” (CC8) |
| “A lot of families use respite care if they’re working, to add on to shifts, so the nurse can stay a little longer.” (CC9) |
| II.C. Other respite uses |
| “An illness. A parent goes into the hospital, and there’s not another trained caregiver. Emergency traveling. You know, another state or country, for a family funeral, or that kind of stuff, is what I’ve also seen it used for. (CC3) |
| “Some families use it so they can just get a break. And it’s not to say, ‘I don’t want my child.’ But just let them just breathe a little bit. They go for three days, and maybe just get a chance to sleep, rest, and let [a respite care center] have the child for three days. Maybe a weekend away.” (CC9) |
| “Some families have used respite where they may need to paint the home, and the child can’t be there.” (CC9) |
| Theme III: Barriers to Respite Care Use |
| III.A. Families cannot fill their basic nursing hours |
| “I really don’t have a lot of people using respite…. In order to use respite, you have to be using all of your regular hours … if these cases aren’t fully staffed, they can’t even use their respite.” (CC2) |
| “But mostly it’s not being used because there’s not enough nurses to even fill the hours.” (CC11) |
| “They can use respite through their waiver if they have it, if the agency has enough staffing. Sometimes they can use it. Sometimes—they are allotted 336 hours a year. Some families use it up like right away. Other families can never use it, because they never are fully staffed.”- (CC4) |
| III.B. Lack of available beds |
| “Unfortunately, sometimes it’s not always available. Sometimes the beds are not available. So those families that do decide to go on a trip and leave their child in the transitional care and the respite facilities, and they can’t, because there’s no beds available for them. I mean, things that we may plan a week ahead, they may need like four, five, six months to plan ahead.” (CC3) |
| “[The respite care center] sometimes is all booked up. They don’t have the bed space. So then these families, like they need a break. And sometimes there’s no way to give it.” (CC4) |
| “I have a family—the parents are from India … and [the respite care center] didn’t have any beds … so the family arranged with [another respite care center], to take him, and it was all set. [But] sure enough they used the bed for something else. And so what this family did instead of mom and dad going to India together, Dad went first, mom stayed home with him, and then they flip-flopped.” (CC2) |
| “During the times of the year … around holidays or vacation, we may have more families requesting stay at [respite care centers]. But unfortunately, sometimes, due to the limited number of beds available, this may not be possible. (CC10) |
| III.C. Parent hesitations |
| “Some families just are like, ‘No, it’s my child, and I can’t leave them somewhere else. And they’re exposed to god know what there.’ You know, infection, whatever.” (CC4) |
| “Or maybe their child is younger, and they can’t imagine…. If their child’s very cognitively aware, I think they’re not going to leave the child [in a respite care center].” (CC4) |
| “Some families don’t want to even think about this opportunity, even if they are totally overwhelmed … they think that when they are not in the picture for a while, then they don’t have control over what’s going on. The child may be harmed.” (CC10) |
| Theme IV: Respite-Related Readmissions |
| IV.A. Readmissions due to lack of nursing coverage |
| “Sometimes we see increased number of medical complications and even hospitalizations or ER [emergency room] visits, that possibly could have been avoided if there was better nursing support.” (CC10) |
| “If you don’t have the nursing, then the parents are up. If the parents are up, then they’re tired. If they’re tired, then mistakes can happen. Then what happens? Then the child has to go back into the hospital…. If you don’t have help, you can’t do it all. You can’t do 24/7.” (CC12) |
| “I have a mom, and she lives in southern Illinois, way down there. So that’s really hard to get nursing…. [Mom] ended up having cancer … she has to go to the hospital. And who’s going to take care of this child? Because her husband works. And then she had two other kids to take care of too, tha. So, then it was like ‘OK, we’re going to put her back in somewhere.’ So we ended up putting her back into [the hospital]—the child. OK? And so the mom got the surgeries and did all that, and she had some recuperation time and all that.” (CC12) |
| IV.B. Readmissions due to home issues |
| “If they don’t have—if power’s out, the electric company, the gas company—they get letters letting them know there is this family in your area that needs to be attended to first. But if definitely it’s not turned on, you need to head to the hospital.” (CC3) |
| “I have a family who had a mice infestation in their apartment…. The nurses—they weren’t going to work there, and nursing stopped. And then mom has three other kids. There’s a dad, but he works all the time. So it’s just her. And her three younger kids are all under four, so it’s just toddlers and everything. And eventually the child was hospitalized because it was just too much. No nursing, mice running around, just mom.” (CC14) |