The Role of Care Coordinators for Children with Respiratory Technologies and Home Nursing

Abstract

Background:

Children with respiratory technologies, particularly those with mechanical ventilation, represent a growing population that require complex home nursing, medical equipment, outpatient medical and habilitative supports to live and thrive in their community. Care coordination is essential to support these children and their families to navigate and integrate key community-based health and educational services, however, care is often fragmented and care coordination needs unmet. Therefore, to fully support children with respiratory technologies, it is critical to understand the role of care coordinators (CCs) and how to sustain this workforce. The aim of this article is to describe CCs' perspective on (1) their role in supporting families in a home care program for children with respiratory technologies and home nursing, and (2) the core components of recruiting into and sustaining the CC workforce.

Methods:

Semistructured interviews were conducted with 15 CC from the Division of Specialized Care for Children (DSCC) Home Care program for children with technology dependence and home nursing in Illinois. Two independent coders utilized a modified template approach and discussed to agreement to analyze transcripts.

Results:

CC averaged 6.6 years of CC experience; the majority had social work or nursing backgrounds. CCs' job satisfaction was derived from their role supporting hospital discharge, seeing children improve over time, and navigating challenges with families. CCs enjoyed working in a collaborative environment where they could draw from their colleagues' experience to solve problems. Job dissatisfaction and job turnover stemmed from difficult family interactions, high caseloads, and redundant and time-intensive administrative tasks, which interfered with family engagement.

Conclusions:

CCs for children with respiratory technologies require diverse skills, but interdisciplinary teams enable collaborative support of families. Seeing children thrive can sustain the workforce, however, CCs report challenges due to high caseloads and administrative tasks, which impede direct family involvement.

Introduction

Children with respiratory technologies have technology and expert nursing needs, required often around the clock to safely live in their home.¹ Children with respiratory technologies and other medical technology dependence are often survivors of extreme prematurity and complex conditions, including genetic, cardiac, pulmonary, and neurological disorders,^2–4 and have high levels of health service utilization.^5–9 Children with respiratory technologies need coordination of doctor's appointments, medications, home nursing, therapies, school services and other community resources,^10–13 and this constant care coordination is time consuming and linked to caregiver stress.^14–16

The multitude of systems that families access is fragmented and difficult to navigate, and gaps exist for coordinated care.^17–20 Care coordination, a central tenant of the pediatric medical home,²¹ has been described by the American Academy of Pediatrics as a process that links children “to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care.”¹⁰ The goals of care coordination are to access and integrate services, link families to service systems, streamline cost, and advocate through family and patient-centered care.^{10,17,22–24} Care coordination programs benefit children and their families by helping keep children healthy and home where they can grow and thrive.^24–26 The National Academy for State Health Policy determined essential care coordination program characteristics: (1) an identified care coordinator (CC), (2) shared care plan, (3) child and family needs assessment, (4) provision of resources and education, and (5) family support and advocacy.²⁷

Care coordination, and therefore CCs, are essential for families, and experienced CCs have greater ability to support families than a workforce with gaps and high turnover. Gaps in skilled CCs, and high employee turnover, particularly those with expertise for children with disabilities, have been previously described.²⁸ What sustains this workforce is incompletely understood because existing literature on care coordination often lacks CC perspectives. The objectives of this study are to evaluate CCs' perspective on (1) their role in supporting families in a home care program for children with respiratory technologies and home nursing and (2) the core components of recruiting into and sustaining the CC workforce.

Materials and Methods

Participant recruitment

The Division of Specialized Care for Children (DSCC), originally established in 1937, began its home care program after the Department of Health and Human Services established the Medically Fragile Technology Dependent waiver,²⁹ allowing technology dependent children to be cared for at home supported by Medicaid-funded long-term care services.³⁰ CCs serve as vital connectors, assisting families in navigating complex health care services: for example, therapies, home care nursing, and durable medical equipment. CCs are required to have a Bachelor's or Master's degree in addition to 1 year of experience in social services or clinical settings.³¹ Eligible participants had worked with the Home Care Program for at least 1 year. DSCC Supervisors were consulted for pilot testing when developing the interview guide and they provided feedback on terminology used and topics covered. Once the study began, supervisors screened employee rosters for eligibility, introduced the study to the cohort of CCs in meetings, and shared email addresses of eligible employees with the principal investigator (PI).

The PI then reached out to eligible participants directly by email and arranged individual meetings with interested participants in their DSCC office at times convenient for the CC. Interviews were conducted in private office spaces, audiotaped, and transcribed professionally. Recruitment continued until the goal sample size was obtained, which coincided with theme saturation in the analysis (when consensus coding did not result in additions or modifications to the analytic codebook). Study enrollment was stopped after fifteen semistructured individual in-person interviews were conducted. Many CCs had experience with providing care for children with broad medical complexity. Although introductory questions inquiring about the CCs training and job experience were broadly focused, we asked CCs to focus on children under 21 and their families who are receiving the Medically Fragile Technology Dependent waiver.

This population was often known to CCs as “the waiver” because it was a requisite for care coordination services through the Home Care program. Forty-four percent of children in this program have a tracheostomy, a fourth have a ventilator, and all qualify for skilled in-home nursing. Interview topics included their educational and employment backgrounds, perspectives on supporting families, home nursing, hospital-to-home transition, and readmissions. CCs provided demographic information. The University of Chicago Institutional Review Board approved this study and informed consent was obtained.

Analytic strategy

Interviews were coded independently by 2 reviewers using an open-coding technique (S.A.S. and E.L.). The interview guide served as the initial codebook as part of a modified template approach, with codes added, altered, or removed in response to consensus themes.³² Coders discussed to agreement on each transcript individually, modifying the codebook throughout the analytic process, and to ensure intercoder reliability using MAXQDA 2017 (VERBI Software, Berlin, Germany) for analysis. The data presented in this article are focused on themes relating to CCs role with families and core components of recruiting into and sustaining the workforce. Other themes have been published previously.^33,34 This article was developed using standard qualitative research guidelines.³⁵

Results

Participant characteristics

Fifteen CCs were enrolled between December 2016 and June 2017 and completed semistructured interviews of average (range) length of 77 (51–122) min. CCs were employed on average (range) of 6.6 (1–27) years and were of mean age of 45.2 years. Fourteen (93%) were female. The majority of respondents (52%) had a master's degree (social work, counseling, or psychology) (Table 1).

Table 1.

Demographic Characteristics of Division of Specialized Care for Children Care Coordinators

	N (%)
Characteristic
Age (years), mean (range)	45.2 (28–57)
Female	14 (93)
Race/ethnicity
Non-Hispanic White	7 (47)
Non-Hispanic Black	6 (40)
Hispanic	2 (13)
Total household income
50–99K	11 (79)
100–150K	3 (21)
Marital status
Nonmarried	4 (27)
Married/Living as married	11 (73)
Years in CC role, mean (range)	6.6 (1–27)
Educational background
Registered Nurse	5 (33)
Masters in Social Work or Counseling	8 (52)
Physical Therapy/Occupational Therapy	2 (13)

CC, care coordinator.

Main topics

The main themes discovered were organized around 2 topics: (1) recruiting and maintaining the pediatric CC workforce (Table 2) and (2) the role of CCs in supporting families of children with respiratory technologies (Table 3).

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.

Table 3.

Themes from Interviews with Care Coordinators Regarding the Role of Care Coordinators in Supporting Families of Children with Respiratory Technologies (N = 15)

Theme I: Impact of CC role supporting children with respiratory technologies and families

I.A. CCs play a critical role in the hospital-to-home transition “we check in—I usually check in the day after. Because the day of, I can't imagine what they're going through. The day after, and then we do a seven-day phone call. And then I'll do my own maybe two-week follow-up type of thing. And then we're out in the home within probably the week or two after. And that's kind of where we get more an idea of how it went and everything.” “the most important thing is to educate the family about our program so they understand the expectations and understand our services, and understand their involvement—that they are part of a team. That they cannot just rely on the program and the nursing approval to really take over their child's care at home … By signing the form, service agreement form, they are taking responsibility to fill in the gaps in case there's either nursing not available or something happens.” “I try to emphasize with parents, at least get one more person to be a trained caregiver, because it can be overwhelming. So at least if you have one more person who's a trained caregiver, you can call on them.” “then the next step is we arrange—we get at least three nursing agencies for interviews. And they come out, and we'll be there. And they interview the nursing agency. And then we give them a little time to think about who they want to go with, and then they let us know that. Because when we send down the initial waiver, we have to indicate what agency they're going to be with.”

I.B. CCs play an essential connector to therapy and school experiences for children with respiratory technologies “I'm a big advocate of them going to school once they get out of the early intervention.” “I told her, I said, ‘He needs to be around peers.’” “I try to encourage them, like ‘They can get their therapies here. They can socialize. They're around other people. It will increase their stimulation.’ But it's the parents' choice.” “We usually encourage—we tell our parents, ‘Let us know when the IEP is. We'll try and go.’”

I.C. CCs support parental skills in advocacy “I think it was even written somewhere in the older manual, was that our role was to empower families to really take over, take charge.” “I tell a parent, ‘You are your child's best advocate. Make sure that you understand what's going on. If you see your child in distress, you know your child. You know when you child is in distress.’ Or ‘Listen to the nurses.’ Especially if a child has been there since birth. ‘You know your child's ups and downs.’” “And this child right now doesn't have a voice, so someone has to have a voice, or someone has to take stands with the family. But we have to be careful. Boundaries, and how we advocate for families. We want to teach them to self-advocate for themselves, and eventually for the child to be self-sufficient or as independent as possible.”

I.D. CCs connect families to other essential services “[When a family moves] I need to do a new home assessment to make sure it is appropriate for home care. And if not, what needs to be done. Like the waiver covers electrical upgrades, if they need electrical upgrades. It covers if there's extermination needed. It will cover modifications if they need like a ramp—a wheelchair ramp or a lift. And if the door maybe to the bathroom needs to be widened, or an accessible shower or something like that. It will cover that.” “There [are] a couple examples when we bring a nursing agency in. When the nurse calls off multiple times, or just doesn't show up. We have the parents call the nursing agency and let them know this is an issue. If we find the nurses have been smoking or using their cell phone. Things that they know they cannot do during their work hours. Then we ask the nursing agency, the supervisor, to step in and talk to them. We try to hold back from getting involved right in the beginning, because we do want parents to communicate with the nursing agency … but there have been instances where parents just feel more comfortable going to the care coordinator first.” “There's times where a family may be getting a car or van lift, or a lift for the home, an exterior lift. And although the agencies that they are working with may have a Spanish-speaking person, they call us. So sometimes we're doing the home visit with them, and translating for the vendor. Or we're on the phone, or we're listening to what's going on, and translating …That's part of care coordination. That's what we do.” “The most recent family reached out yesterday. The equipment they have for their child's feeding is not working properly, and so they're trying to troubleshoot with the home equipment supplier, who we are almost the middle person, I would say, between the family and them. And they want to charge them $150. Well, our families don't have $150 to go and just give to them for a service fee. So now I'm trying to work to see, can Medicaid cover this? If Medicaid can't cover it, can we as DSCC cover it?”

Theme II: The Care Coordinators' relationships with families are critical for service coordination

II.A. CCs have positive relationships with families “I would say 95 percent of the families are very nice and gracious.” “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.” “We are their right-hand person. We are the person that they feel they can go to for any question. Whether we know the answer or not, we will direct them to the person they need to go to. But overall, the care coordinator's job is to make that family feel comfortable, and feel like they have somebody who understands them, and who will help them. Because the last thing you want them to do is feel alone. They already have the stress of having this complex child. They may have the stress of being a single parent, and maybe having other children. So, I always just try to reinforce that, ‘Hey, I'm here for you. I will get you in the direction you need to go. So just call me. If you don't know who else to call, call me.’” “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. That's nice.”

II.B. CCs have frequent, consistent contact with families, which sustains crucial longitudinal relationships “There are some that I talk to all the time, because they always have needs … I'm talking to them all the time. Some of them I literally speak to once a month, with that monthly phone call.” “We spend a lot of time talking. Every encounter, each month, we average 20 to 30 minutes [each] phone call. And I just make sure she is heard. I let her just talk. Get it all out. Let me know—and that's how I learn too.” “just talking with the families. Like when it's the monthly contact. Just reaching out to them and I try to—even after the medical stuff is over with, I do try to find out ‘OK, well how you guys are doing. What happened last month? Any good things?’ You know. I don't like to keep it just medical. I do share some things about myself. Not everything, but you know, like family stuff, a little, so they can feel more comfortable with telling me things.”

Theme III: Care Coordinators' interactions with families can be negative, evasive, and challenging

III.A. Families with multiple stressors sometimes take out frustration on CCs “We get a lot of parents who call and will take it out on us. And we just have to learn not to take it personally, and to just be that listening ear.” “We get called by parents a lot, really frustrated. Like yelling, swearing, a lot … But they've already probably been up since 6:00 a.m. when their nurse was supposed to get there, and trying to troubleshoot with the agency first, and see who can come help out. And it all comes back to I think a lack of nursing. It has to be the biggest issue we deal with here. The biggest frustration.” “—I feel like the biggest struggle I've had recently is families being like, ‘Well, don't send someone out here that can't staff me or that is going to send me nurses who call off.’ And I can't—I have no control over that, and then they get frustrated, and then that's where the phone calls where they get frustrated, and they're yelling, and they're swearing, and they're upset with us come in. And that's a lot of our day.”

III.B. Busy families are difficult to reach, which frustrates CCs “I can't always capture them every month. I feel like I'm chasing them down. So, I'm trying to watch my limit. I mean, it took five attempts, this one single father.” “I'm trying to gear up for the one parent I just—I can't get that initial visit yet …. I've talked to my manager. We were threatening to close it, and she still didn't call me.”

III.C. Other negative interactions with families are challenging for CCs “then I have certain families that are very demanding, because they always have an issue.” “I have one family—I just hate picking up the phone to call her. She's just so mean! … I don't even want to pick up the phone and call the woman.” “Sometimes we have the feeling that some parents are just—don't feel like taking initiative on their own. They would call with every simple easy question that instead of asking us, they could ask directly to the nurse or to the nursing agency or to the doctor or to the transportation provider. So sometimes I think that this care coordination may allow parents to stay lazy, a little bit, when it comes to taking initiative.”

CC, care coordinator; DSCC, Division of Specialized Care for Children; IEP, individualized education program.

Topic 1: recruiting and maintaining the pediatric CC workforce

Interview topics included CCs' educational and career journey as well as insight into frequent job turnover (Table 2).

Major theme 1: CCs have relevant personal and professional characteristics and come from diverse training backgrounds

CCs valued colleagues and supervisors from varied disciplines (eg, psychology, early childhood services, foster care, and nursing), and many CCs were parents of children with medical complexity and had received DSCC services. CCs described parenthood as enabling them to empathize with families, “before I ever was a nurse … I have a parental perspective.”

Major theme 2: meaningful relationships with families and coworkers sustain CCs in their job

CCs shared that relationships with families and children's progress over time was meaningful and sustained CCs in their positions. “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 … that's what keeps me here.” This love for families contributed to job maintenance, “the [CCs] that are here, they love what they do. And they're staying because they love their families.”

CCs with long employment in the organization recognized that coworker and managerial relationships were an essential component to job satisfaction. “I like the people I work with … we have a nice, supportive office.”

Major theme 3: insight into frequent job turnover

A few CCs insinuated they would like to leave the position either to pursue new opportunities after additional education, or because of dissatisfaction: “lately, to be honest, I've been struggling with, is this the right place for me?” CCs described job dissatisfaction from 2 main sources: (1) Tasks described as “paper pushing”; and (2) High-volume caseloads, which precluded family engagement. While most described their own commitment to the field, they acknowledged others left the position after short periods.

CCs described a high volume of tasks involved with case applications, renewals, and medical record management. CCs, generally from nursing and social work backgrounds, preferred direct service provision and found these tasks draining. “It's so much paperwork … it's better face-to-face … that's what I miss.” The paperwork tasks were frustrating because they were seen as bureaucratic and unnecessarily complicated. CCs longed for system inefficiency solutions and commonsense practice, “Why do I have to 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?”

CCs also shared frustration that case volumes prevented direct family engagement. They would have preferred to spend time supporting medical and school visits. “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?”

Major theme 4: insight into the attractive qualities of the job opportunities for CC recruitment

CCs described satisfaction and meaning from their position, which was classified in 4 subthemes: (A) Supporting hospital discharge; (B) Seeing children improve and develop; (C) The opportunity to advocate for children and families; and (D) Navigating challenges for families.

CCs helped to prepare for hospital discharge and celebrated with families, taking pride and ownership of their role: “I just took another family home … tomorrow I'm going on another new family visit … that's always so rewarding.” “I still get teary-eyed when they go home.”

Due to the longitudinal nature of their relationships with families, CCs had the opportunity to see children develop over time, often outgrowing their need for medical technologies or home nursing. “He's off the oxygen, off the G-tube. He eats by mouth … he finally went to school … When I met him, he was so fragile … and that's what I love—when I'm no longer needed.” CCs described this progress as contributing to job sustainability.

CCs often strongly identified with their unique role of serving as the patient advocate. “I think it takes a special person to do the job that we do…Someone needs to advocate for these children.”

Finally, opportunities to navigate health system challenges for families were rewarding for CCs. In particular, CCs identified interventions preventing hospitalizations as highly meaningful. “Without my intervention, the child could be either hospitalized or we wouldn't know where to go … this is really rewarding.”

Topic 2: the role of CCs in supporting families of children with respiratory technologies

Major theme 1: impact of CC role supporting children with respiratory technologies and families

CCs described their role in supporting families in 4 main subthemes: (A) Hospital-to-home transition; (B) Therapy and school experiences; (C) Supporting parental advocacy; and (D) Connecting families to other essential services (Table 3).

CCs became involved with families either during the hospital discharge process or shortly thereafter. Complex coordination for home-based services was a core job activity: “We arrange … at least three nursing agencies for interviews.” CCs also educated parents about the role of DSCC, and they reinforced messaging from the inpatient team, (eg, encouraging additional caregivers be trained).

Connecting to school and therapy services was described as a principal CC activity, and overall CCs described encouraging and convincing parents to participate if hesitant.

CCs also described supporting the development of parental advocacy skills. “Our role was to empower families to really take charge.” CCs also described child empowerment, “eventually for the child to be self-sufficient as possible.” CCs saw their role as a transitional support, not intended as an indefinite need.

Major theme 2: CCs' relationships with families are critical for service coordination

CCs reflected upon the quality of their engagement with families, and shared that critical qualities for impactful CCs were positive relationships with families with frequent, consistent contact.

CCs derived meaning from being the point person for stressed families. “To see the parent's relief and know that they have this go-to person, that's an awesome part of the job.” Another CC: “We are their right-hand person … for any question.”

The frequency of contact was crucial for forming meaningful relationships. CCs describe talking to families monthly, each call averaging “20 to 30 minutes.” Although the monthly check-ins were mandatory, CCs used them to form relationships: “I don't like to keep it just medical. I do share some things about myself … so they can feel more comfortable with telling me things.”

Major theme 3: CCs' interactions with families can be negative, evasive, and challenging

The negative relationships CCs described with families were categorized into 3 subthemes: (A) Families with multiple stressors sometimes take out frustration on CCs; (B) Busy families are difficult to reach; and (C) Other negative interactions. Positive mentorship within the DSCC organization, peer support, internal resiliency, and balance within caseload can help to protect CC from negative relationships.

CCs often recognized that while they experienced negative interactions with parents, they were not the source of their anger. CCs described that parents were often highly frustrated with lack of home nursing and chronic sleep deprivation. “They've probably been up since 6:00 a.m. when their nurse was supposed to get there.”

CCs describe many attempts to reach families, sometimes feeling as if they are “chasing them down.” Rarely the agency would threaten to withdraw services from these chronically nonresponsive families, but more often persistent CCs would ultimately make contact.

Some of the negative interactions with families were not attributed to overall stress or lack of support, but just a general negative engagement. “I have one family—I just hate picking up the phone to call her. She's just so mean!” These stories of negative interactions were consistent, and clearly top of mind for recall, but did not represent the most common engagement for CC and assigned families.

Discussion

CCs for children with respiratory technologies serve as essential service navigators. The expertise needed for CCs for children requiring home nursing is broad, but need not come from single individuals when work environments are collaborative. To sustain and support a skilled CC workforce, organizations must encourage the core meaningful components of the work, which drew employees into the role and when possible, minimize the components of job dissatisfaction, which detract from family engagement.

CCs in our study described required paperwork as distracting from core meaningful job activities. The documentation for service approvals and renewals required the synthesis of complex medical information from multiple sources. When possible, system inefficiencies ought to be addressed to minimize the CC role as a “paper pusher.” In an era where electronic medical records are ubiquitous and increasingly interconnected, these linkages ought to be leveraged to reduce redundancies. A qualitative study of CCs in the United Kingdom identified similar weariness with paperwork, particularly with frequent changes in required documentation.³⁶ Successfully navigating these competing priorities requires leadership and CCs to collaborate to prioritize essential documentation.

As stated by Hannigan et al., “to be truly collaborative … care coordination also needs to be extricated from the culture of performance management which currently envelops it and risk reducing it to a series of box-ticking exercises.”³⁶ The focus on documentation and creation of care coordination plans deters from the actual goal of the care coordination to maintain the highly valued patient-focused relationships and assist in the navigation of complex medical systems.³⁷

Cost-effectiveness is often the currency used to justify the existence of care coordination programs and roles.^38,39 However, proving this outcome, often through demonstrating prevention of readmissions or other measures of health care utilization, requires standardized data collection. Paradoxically, this justification of program cost-effectiveness diverts CC time away from interactive activities with the individuals the program is designed to support, therein making the program less effective. If instead, programs were built upon a value of patient centeredness, or family and child flourishing outcomes, documentation could reflect individualized interventions by CCs to improve progress toward family goals, and thereby validate the roles most important to CCs and families. The move away from fee-for-service models and toward value-based models should enable providers to invest in services, such as care coordination, which improve patient outcomes,⁴⁰ and there is evidence that programs are expanding and investing in care coordination activities.⁴¹

This study ought to be interpreted in light of several important limitations. Our interviews were conducted with CCs with at least 1 year of experience, which enabled expert insight into the longitudinal relationships with families. However, CCs with shorter periods of employment may have important perspectives on the field or job turnover. This study's greatest limitation is the lack of family perspective; future studies should inquire with parents of children with respiratory technologies about the role of CCs. Finally, it is important to note that these interviews were completed before the COVID-19 pandemic shifted many work environments to virtual settings. Recipients of care coordination have been described in other Medicaid cohorts as valuing face-to-face interactions with CCs.⁴² It is not yet known to what extent virtual encounters between families and CCs facilitate the relationship formation key to quality care coordination.

Conclusions

Care coordination services for children with respiratory technologies require highly skilled knowledge of complex health systems and family needs. Diverse educational and employment backgrounds bring relevant expertise to the position, yet on-the-job training with supportive mentorship is critical. Administrative inefficiencies reveal not merely job nuisances, but systemic tensions between performance management through data production, and quality person-centered care. Opportunities to build meaningful relationships with families and celebrate progress made by children with medical fragility helps to cultivate and sustain a skilled CC workforce.

Authors' Contributions

All authors approved the final article as submitted and agree to be accountable for all aspects of the work.

Author Disclosure Statement

The authors have no financial relationships related to this work to disclose. The authors declare that there are no conflicts of interest.

Funding Information

Dr. Sobotka receives support from The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD, K23 HD097276) and the T73 Leadership Education in Neurodevelopmental and Related Disorders (LEND) Training Program (T73MC11047).