Table 2.

Themes from Interviews with Care Coordinators Regarding Recruiting and Maintaining a Pediatric Care Coordinator Workforce (N = 15)

Theme I: CCs have relevant professional and personal characteristics and come from diverse training backgrounds

I.A. CCs have diverse prejob training and experience. “I started studying clinical psychology.” “I started off in foster care, working with DCFS. I did that for 10 years.” “I did early childhood development, zero to three. I was a service coordinator.” “I've been a nurse for 17 years. I started in the [Neonatal Intensive Care Unit] and then I went to a peds department for a couple more years and then came here.”—CC#11

I.B. CCs appreciate interdisciplinary colleagues “That's why we're fortunate that we have a nice blend of both [social work and nursing] specialties, and we do even unofficially, if somebody gets off the phone, other people sit in cubicles next to the person and say, ‘Oh my goodness, what do I do?’ And then we kind of brainstorm unofficially in trying to assist somebody with a situation.” “I have a very good nursing supervisor. I lean on her. And we work together as a team.”

I.C. CCs have experience with parenthood, often including experiences with pediatric health care and children with special health care needs “I'm also the parent of a child who has special needs, before I ever was a nurse. I have a parental perspective … we had intermittent nursing.”—CC#2 “My son is nine … he's special needs.”—CC#9 “My son … was a participant at DSCC in the core program.”—CC#10

Theme II: Meaningful relationships with families and coworkers sustain CCs in their job

II.A. Love and compassion for families makes the job meaningful “the ones that are here, they love what they do. And they're staying because they love their families.” “Since I've been here such a long time, I've had some families for a very long time. So, I see the kids grow up and get a relationship with the parent.” “Some of these families you keep from the moment they're referred to you, and you see them grow and you see all the changes the child goes through. So, I think that's what keeps me here.” “I feel like I have a really good rapport with my families. Even my hard ones, over the years, they're like, ‘I'm glad you're my care coordinator.’ And that's good to hear too, once in a while. That they really appreciate what I do, or they recognize that I am trying to help them.” “I like the parents. Sometimes the parents are not in the best positions. Like financially, they may not be working. They can't work. They keep losing jobs. But they keep going. So, to see that inspiration in people, you can't ever feel—I guess you can't ever feel like you don't have enough, when you see others that have less, and they keep going. So, it's just inspirational to see them and their fight.” “Our incentive is the families—that's what does it for us. Q: That's what keeps you here. A: That's what keeps it, because we're a bunch of social workers and nurses. So obviously we got into our fields because we love working with people. So that's what keeps us going.”

II.B. Support of team and mentors within organization sustain CC in role “I've always had really nice bosses. Very flexible. I worked about ten years part-time when my kids were younger. I like the people I work with. I think we have a nice, supportive office.” “What kind of things keep you going in this job on the positive end? A: My coworkers! These young ladies here—we have no men any more. But these young ladies have been really golden. We're able to go to each other's office or cubicles and say, ‘Hey, I'm tired. I'm frustrated.’ Talk it out. That's the best thing.” “I think the camaraderie of the office, understanding that we're all here. We may have our good days and bad days. But to be able to talk to my colleagues and say, ‘Hey, this is what's going on.’ I have one colleague—we've been in the social service field for 22 years together … I've gotten to know a lot of the workers here, and it has been good. It helps. It helps you balance out things. Say, ‘OK, I'm not the only one losing my mind here.’ ‘How did you do this? How did you do that?’ So yeah. It's been very helpful.”

Theme III: Insight into frequent job turnover

III.A. Job tasks described as “paper pushing” contribute to burn out “the downside is … I'm not using my nursing, a lot of my nursing knowledge … sometimes we feel like the paper becomes more important than the person. But you have to understand that compliance comes at a cost. You know, the state, there has to be compliance, and the way they measure compliance is by paperwork and things like that. We all hope maybe it would become more efficient or less in the paperwork burden, but then, you know, then the state has to report to the feds, and so everybody's got their job to do … That is the little frustrating part of it.” “Why do I have to write, fill out a million forms to get you one piece of equipment, that you can clearly see they need, if you just look at them?!” “Here it's like—it's so much paperwork. And I don't even have to go out but really once a year for each client, unless you need me to come out more. But it's so much better face to face. And so much better when you can be more involved with the client. And that's what I miss.”

III.B. Caseloads ought to match CC engagement opportunities to sustain satisfaction “When it comes to care coordination, we should be going to medical appointments, right? We should be going to homes more often in support of that family when we can. How can it happen when caseloads are so large?” “I feel like they should—if they came out more and talked to us more, because like, 25, for what they're expecting us to do, is a lot sometimes. And we've got a lot of new people. And I'm like, if I've been here for all this time, and I'm struggling some days to keep afloat, then how are they going to do?” “And we're required to do a monthly phone call, which is very challenging, especially when you have 28 cases, you're doing six renewals, or a new waiver. I have six renewals and one waiver I'm working on.” “then too, sometimes we feel like our caseload is so high that we can't—and there's so much paperwork involved—that I can't really do social services. Like you could want to talk to me for two hours and I could—but I can't. Like a parent sometimes needs to just vent. But I can't really vent with you, because I have a deadline to meet. Q: Yeah. That makes sense. A: That's the difficult part, the challenging part. And so almost sometimes I tell somebody, ‘I'm working on your behalf, but stop calling me, because you're bothering me.’ That's what I [laugh] want to say.” “I know that it's difficult because this work, it's just so overwhelming, and it's just constantly—we're getting constant referrals.”

Theme IV: Insight into attractive qualities of job opportunities for CC recruitment

IV.A. Supporting hospital discharge is rewarding for CCs “I would just say getting any of these kids home is rewarding … It really is. And I just took another family home the week before last, and tomorrow I'm going out on another new family visit … So that's always rewarding. They're happy to be home. But we know, you know, maybe things won't be so smooth down the road, but we try and celebrate [laugh] when they go home.” “I think the best one is seeing the child go home. … a lot of us meet the families in the hospital … you get to see them interact with their child there in that space, but then when you see them go home and the relief they have—I went to a discharge meeting with another care coordinator, and the mom was just so excited to go home. Her baby had been there for about fifteen, sixteen months, had never been home, and she was just so happy that that was finally happening. So, to see her face, to see the parent's relief and know that they have this go-to person, that's an awesome part of the job. To get them to that point.” “getting them to go home from the hospital. I still get teary-eyed when they go home. So that mom doesn't have to run every day up to that hospital. That's just—that's so awesome. And that you finally get them all home and you do that 30-day visit when they go home, and you're like, ‘Yeah!’ They're home. Mom's home. The structure is coming back together. The schedules are coming together. And you can see she's a little more relaxed, because she's not running. And yeah, yeah. That's the best—I love that part. I just love that part.”

IV.B. Seeing children improve and develop is meaningful for CCs “So, I saw her one day and she was doing great! [She] was playing like any other child.” “Some of these families you keep from the moment they're referred to you, and you see them grow and you see all the changes the child goes through. So, I think that's what keeps me here.” “seeing the good work that we do—it's a very rewarding experience. Especially when you have a child that is deemed so fragile that they may not make it. And then to see that child no longer need your services because they've been weaned off all the technology, and are fine, and functioning, and healthy.” “He's off the oxygen, off the G-tube. He eats by mouth … he finally went to school … He's running around, active. Walking, talking, riding a bike, and all those things. And that is what I love about that …. When I met him, he was so fragile…. And he's been without his trach—I think this year marks a year and a half. Maybe this month. And so, he's thriving. And so, I'm no longer—and that's what I love—when I'm no longer needed, because they worked.”

IV.C. The opportunity to advocate for children and families validates role for CCs “I think it takes a special person to do the job that we do … Someone needs to advocate for these children.” “This was a conversation I had yesterday. It's funny. Because it's not the pay. It is the families. It really is. It's the children. Wanting to make sure that—as much as you can advocate for them. Wanting to make sure they have what they need to thrive.” “I've found my voice in this job. I've learned a lot. I've learned about insurance. I've learned about education plans. How to advocate, best as I can. It has been very interesting … And I continue to learn.”

IV.D. Navigating challenges for families is rewarding for CCs “if I can troubleshoot and solve something for those families, and occasionally …without my intervention, the child could be either hospitalized or we wouldn't know where to go or what to do. So, this is really rewarding.” “Over the last 15 months, I've seen that being able to give my family or supply my family with their need—like meet their need. If they need nursing, if I can call different nursing agencies and find nursing, then that is fulfilling to me. When a parent is saying, ‘I can't go to work because I don't have nursing’ or ‘I'm feeling overwhelmed because I have three other children and I need nursing’—if I can meet that need within a good timeframe, then that is very fulfilling to me. Even being able to provide them with resources. If they need repairs to their equipment and things like that. Those are the things that make me feel like, whoo, I've accomplished something… when I'm able to meet those needs, it really makes me feel accomplished.”

CC, care coordinator; DSCC, Division of Specialized Care for Children.